One day at a time.

Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better.

Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more stable place.

Most of all, remember that it's not your fault if you fall down after doing your best. You have something that is external to your control and it's bound to win fights at time. Take the time to get better then stand up again. One day at a time.

If it is safe for you to do so, talk about it with your HR or your manager. They should understand that sometimes, you will be focused on that illness instead of workplace productivity. That's okay, that's how it should be. Trying to win both at the same time is how you burn yourself up.

There will be some unconscious bias against you, you'll need to play your cards well. Some people will try to support you yet come hard at you when you drop the ball. Remind them that you are doing your best and that the cause is out of your control, but don't waste your time trying to argue your way into changing their opinion of you. Some people will have empathy, others won't no matter what. Surround yourself with allies and built a support network. You may even meet other people that have chronic illnesses, and they will understand you the best.

I find that it's better to say as little as possible, you have the right to privacy after all. Your coworkers don't have to know the details of your life.

It's a marathon, really.

Someone else mentioned in the comments that you must learn to push through and ignore your illness. That is true but comes with warnings.

Your baseline will be at a different place than someone who is healthy. You must learn it and learn to have realistic goals. You should not try to push yourself past this, it will burn you. Especially if that illness is new and you are used to how you were previously. You won't be the same, and that's alright. Don't aim for "healthy person + 10%". Instead, aim for "your reality + 10%".

What is important is to learn to aim for a little above that baseline. Push yourself in realistic ways. Hit the gym even if you don't want to. See a therapist even if it feels like a chore. Do all the thing you won't want to do. They are hard and it's okay. Especially if you were down for a long time, you probably developed bad habits. It's okay to be lazy at the start but you need to find your cruise speed.

Push yourself as hard as your illness allows. If that means only being able to go to the gym once a month and taking short walks on most weeks, then so be it. But stay active, both of mind and body.

Know exactly what your illness allows you. Once you start pushing yourself you will be tempted to ignore these limits - don't. Be upfront and honest with yourself. Learn to say no.

Nice comment, but one nit: I think awareness + acceptance + gratitude is a better path than ignoring an illness. I say this as someone that has a lot of deeply ingrained avoidance behaviors (e.g. smoking weed 24/7 to mask anxiety and pain, isolating myself to avoid social anxiety). Obviously, ignoring problems can often make them worse, and sometimes simple solutions do exist (e.g. I have had disabling IBS off and on for 20+ years that is improved significantly by avoiding alcohol and taking fiber). That said, everyone needs relief at times, so be kind to yourself about avoidance patterns.

Awareness is simply noticing how I feel without judgment or reaction, but with the attitude of a curious observer. So instead of A: (feel pain —> “I’m fucked up / disabled” narrative) or B: (feel pain —> <ignore> —> <subconscious avoidance behaviors>), it’s like C: (feel pain —> “this is a sensation I’m experiencing” —> <no action>). Needless to say, this is not an easy thing to do and takes practice.

Acceptance to me means not defining myself or my self-worth in terms of my illness(es), or comparing myself to others. However, it does not mean accepting defeat or relinquishing hope that things can improve.

Gratitude looks like being aware of and thankful for the wide world of things that you can do and experience, the people that love you (even if you can’t think of any, they’re out there), and remembering the “fact” that being a conscious creature in this strange and beautiful universe is an infinitely valuable gift.

I very much agree. I do not recommend "ignoring" anything, but I wanted to address this point since I saw it coming up in other comment threads. Acceptance is a very good word to describe it. You came up with some great points, I'll do my best to remember them.

Yeah this is somewhat related to the spoon metaphor[1], right? Basically another term for bandwidth, and acknowledging and accepting that your bandwidth will be at a different place from someone who is healthy.

1: https://en.wikipedia.org/wiki/Spoon_theory

I've read this metaphor and know a lot of people who use it. It's very easy to use and explain, which in my opinion is its power.

I don't personally use it, but I'm sure being aware of it has changed my perspective. That probably explains why you can recognize it in my personal philosophies.

I pushed through for 20 years. I knew something was wrong, but doctors and family were awlaeays dismissive.

My body and mind completely gave out. I’m essentially fully disabled, but because it’s not directly visible I couldn’t get disability. Even when I was in bed lights off for 18+ hours a day in horrible agony.

There are limits to what the body can take without correct treatment.

> I find that it's better to say as little as possible, you have the right to privacy after all. Your coworkers don't have to know the details of your life.

I recommend not going into specifics about your condition if you choose to say anything at all about it. You will come across people who will have opinions about it, despite not having to live with it.

Also, be aware that it is illegal for your workplace to pry about your health if you don't want to disclose specifics.

In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics.

If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they won't do it with it or they'll hold it against you. My manager at Intuit just said "no" to every single request my doctor had written down. HR's response was to just shrug their shoulders and say they have no authority. The next company just laid me off for having too many doctor's appointments.

The best thing you can do to improve your work-life with a chronic illness/disability is to find a great manager. The company that laided me off only did it after my manager changed away from the person I actually interviewed with. Remote work is generally easier to keep your illness from being noticeable to as many people.

And while it is illegal for your workplace to do all sorts of things, they will still do it. Suing a current/former employer is a nuclear option that will likely hurt you far more than it could ever help you. They can always get retribution every time a future employer calls to confirm previous employment.

It's been 5 years now, and I still feel guilty about not suing Intuit over my entire experience there. Not because I needed the attention, money, drama, etc. Just because I know they continued doing it to more people like me after I left.

As a more practical matter, I've found it really important to be smart about when I change/add/remove my prescriptions. If you take enough drugs, there will be bad side-effects, and you don't want to have it happen on the day of your annual review (speaking from experience), big presentation, etc.

> In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics.

This has been my experience, as well. I only gave that advice because I know of several people who wear their conditions on their sleeve and are successful doing so, however it's certainly not the path I would choose for myself. I agree with the rest of your post, as well.

> If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they won't do it with it or they'll hold it against you.

I'd be careful of this approach if there is something like a company rule that all accommodations must go through HR.

Totally agree, you do not have to let people know. I have an employee that told me about their condition and made requests to me that I was happy to oblige but I still told him to go to HR and make a reasonable accommodation request. Doesn’t matter if I’m going to be decent about this, you want it in writing and mandated.

I used to agree with this position but after the last 3 companies I've worked for I've learned the hard way to handle it differently.

You sound like a manager who actually cares and empathizes with your employee. I had a manager like you. It was amazing. But you aren't the norm.

Going to HR will generally only draw negative attention. There is no situation I've seen where someone needed HR and HR actually did anything meaningful to support them.

I prefer to deal with each manager differently. Getting it in your HR file means you lose control over who knows what, and how it was explained to them.

Partial agree here. HR can be useful but it depends on the company's culture and under good circumstances, it won't be needed. You want a place that will appreciate your contributions and appreciate the value of their long-term investment in people.

If it becomes apparent that $CURRENT_EMPLOYER is not such a place, it's time to start protecting yourself with things like formal disability accommodations through HR, etc. The problem is that once this becomes apparent, shrewd politicians will have already worked to make it look like your accommodations are just a cover-up. That's not necessarily a deal killer, as every company puts a different weight on the legal risk that HR exists to prevent, but it's not likely to ingratiate your manager, which makes things difficult.

The long and short of it is that it's folly to imagine that HR is in your corner. They are paid by the company and they exist to keep the company free from the mind-boggling expense of lawsuits. You can work this to your advantage sometimes.

> Also, be aware that it is illegal for your workplace to pry about your health if you don't want to disclose specifics.

I’m sure this varies around the world and exactly what this looks like in practice isn’t simple. Here in NZ, if the illness has the potential to impact on your work I believe you need to disclose it.

Illness or not, this is good advice for everyone. Each has their own challenge(s) whether they are of the diagnosable kind or just fatigue, anxiety etc.

"just" seems a pretty dismissive framing...

Sure but not everything is the same degree of disabling. Heavy arthritis might leave you unable to type, fatigue (non serious, non chronic) just makes it hard to get out of bed. Both are challenges requiring the perspective of taking it one day at a time.

This is great advice. Stability and looking after yourself are key strategies to make your life easier. Save money if you can. Having a buffer makes it easier to say no or walk away or take time off.

I think that the invisibility of chronic illness combined with the expectations of society and others is the hardest thing to deal with. Especially during certain life phases, and especially with people who are close where the expectations reveal themselves over time (family, partners / their family, business associates). Empathy can erode over time too.

Every man and his dog will give you advice how to manage or cure things, but in the case of an ambiguous chronic illness, I found that being selective about who you listen to / when you listen is best. Some days you say to hell with it and ignore everyone's advice. Other days you will wake up and say, today is the day I am going to try this that I haven't tried before. Also keep an eye out for those little things that make a difference that nobody knows about but you. Don't feel like you have to justify them to anyone.

Sometimes there's even conscious bias against vulnerable people. For example, VietJet forces anyone who has any type of injury, disability or is pregnant to sign an indemnity form before being allowed to board. If you read what you're signing, you'd also notice that it goes beyond the condition and grants VietJet indemnity over anything that happens on the flight.

> This won't cure it (don't listen to people that say it will)

I've learned not to listen to people that say that I can't or it won't.

This is exactly my point. Make your own opinions about everything and don't let someone else's views demoralize you if they are irrelevant to you. :)

This is going to be blunt and a little depressing.

For me, it's all about reducing expectations and accepting more disappointments. Not as many doors will be open to me. I tend to think less about what I can do and more about what I will be able to maintain later on as my situation deteriorates. Just as as most adolescents accept that they won't be astronauts or Presidents, I have had to accept that far more mundane things will simply be out of reach.

As a life, it is smaller than most, not quite as brightly colored as that of a you who would have been healthy.

I try to be prepared to do things when I have that energy available to me, but I make sure that those things are important, because I cannot fritter away the few times I am capable.

You also have to develop some patience: patience with explaining things to strangers who may or may not be well-meaning with their questions, patience with friends who do not "get" that you won't be able to make it that night, and finally patience with yourself for not meeting your own expectations.

This all sounds very Zen when I put it that way but I am keeping much of the sadness and bitterness out of my description.

Not quite illness, but I'm still here, after surviving a 500Lbs SVBIED blast in Afghanistan. ~300 surgeries/10yrs later, I'm sitting here trying to become a product engineer while dealing what could be construed as hurdles:

-Massive insomnia. I try to meditate, read tech news and listen to Javascript lectures. I can't reliably schedule meetings in the morning due to sometimes not falling asleep until 6-7am. Hack your environment to remove blue light.

-Pain. Basically, my only available option is narcotics, which I refuse to take for obvious reasons. Meditation, acupuncture helps.

The stress comes from how others react to me. They don't see the behind the scenes, so I'm just some young, rather unprofessional-looking guy, making halfway attempts. I chose to ignore that completely, because at the end of the day, none of these people are helping the situation in any way.

It surely helps to have a never-ending will to go forward, on step at a time.

One piece of advice I would give is to focus on positive stuff. It's all too often very easy to find the negatives. Don't take the easy route.

Hi. Thank you for posting. Dayum.

re Insomnia & anxiety: Have you ruled out nerve related causes? Maybe injury or impingement?

I ask because my insomnia and anxiety was largely resolved after spinal surgery. A lumbar fusion eliminated maybe 80% of symptoms. Removing cervical (upper spine) bone spurs another 10%.

Prior to that, my doctors had me try all sorts of pharmacological and cognitive treatments. As my symptoms got progressively worse. No one considered a physical cause. That my surgeries helped, necessary for other problems, was just a lucky side effect.

None of my reading about anxiety even hints that feeled emotion can have a physical cause, that the physical sensations of anxiety can induce emotional anxiety. Both a mind blow and facepalm obvious at the same time.

I'm now using gabapentin to manage remaining nerve pain symptoms. (Don't know if I'm up for another surgery.) Works pretty good, but robs me of my "executive function", so caveat emptor.

Good luck. I hope you find some relief.

Thank you for your insight. I have fairly substantial nerve damage, all over the place. Unfortunately, I didn't have much success with that path

> ~300 surgeries

Oh my god, I can't even imagine.

Good for you for never giving up, never showing the pain you go through, and for ignoring other people's reactions. That shows resilience.

"There's been times where I could have folded". Hah.

We recently learned that the chronic illness in our family was due to long-term toxic mold exposure. Here's what we have learned over the last 10+ years:

1) Learn to advocate for yourself. One wise doctor told us "we're all just guessing". I don't know exactly what you are dealing with, but do your own research and seek out health practitioners that are on the leading edge of that community. 2) Learn your "dose". Every body is unique and has its own limits. There is no "normal" with chronic illness 3) Trust your gut. Remember that the struggle is real. There are a lot of doubters, questioners, and "helpful" people. You know what is best for your body. 4) Seek out a community of faith/meditation/prayer/therapy/etc. Dealing with Chronic illness is often more mental than physical.

Woah. Glad you figured out the cause! That reminds me of a Reddit post where someone thought they were being roofied and raped, but where bed bugs were found to be the ultimate cause of all their symptoms.

I'll just leave this here since it was eye opening for me: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5377931/

Wow, yes. All of that. That is basically our story.

My email is in my profile if you want to reach out.

How did you discover that toxic mold exposure was the cause?

After trying lots of other things, we finally got tested for mycotoxins, a mold byproduct, and after that test we started testing our house and discovered mold there. Neil Nathan's book "Toxic" was super-helpful in teasing out the many confusing and overlapping symptoms associated with many chronic illnesses.

Did the symptoms go away after treating the source of the mold? I'm also curious about the symptoms that were experienced if you're comfortable sharing.

No, the symptoms haven't gone away yet, but we are improving. We moved out of our house 6 months ago. Other folks we talked to that have dealt with mold have taken 1 year or more to get back to some semblance of normal

Can I ask what symptoms you had that were caused by mold?

Mold illness is nasty. Each of the three of us experienced different symptoms. Some of our symptoms included increased food sensitivities, brain fog and neurological symptoms, mood swings, random muscle aches ("knots"), occasional random sharp pains, redness and/or swelling of hands or feet. None of those were particularly consistent but did reoccur over time.

I developed vitiligo a few months after moving into a new apartment which had a mild sewage leak. I'm pretty sure the apartment caused my condition as there is no other case of vitiligo in my family and it is known to be triggered by chemical irritants.

You may want to consider testing your apartment for endotoxins (or just moving if possible). Endotoxins come from the cell walls of gram-negative bacteria for which the most common source is sewer leaks. Endotoxins are toxic and can cause a range of symptoms. Unfortunately, our house tested high for those as well.

I've had MS for probably about 5 years now. Thankfully my case is relatively mild, but it can still be both disruptive and stressful at times (especially during my first few attacks, prior to formal diagnosis).

I spent a lot of time obsessing over it and the rest of my life was suffering as a result (it really exacerbated my trouble sleeping into a serious problem). In order to combat this I mostly tried to spend my time either being productive or doing whatever recreational activities my condition would allow.

Over time, as I started to eliminate worries (diagnosis, medication, learning what would cause flair-ups and just generally coming to a better understanding of it), it's become more or less routine/normal. Can't say the same will apply to other people, but that's how it has played out for me so far.

Best of luck and apologies that I can't give a more helpful answer.

Similarly, I have chronic leukemia for more than 5 years. It will never go away but it is manageable, to the extend where I can live my life just like a normal person and with life expectancy of 25 more years.

The first year was hard, but I managed to live through it somehow. I deal with it by not dealing with it and forgetting about it, except when it is time for me to take my medication and the regular doctors visit every three months.

It did change me over time, especially because I am in my late twenties right now and diagnosed when I was 24, I became a lot more reckless with my decisions (I used to be a control freak) and my illusion of healthy/successful/unstoppable self was shattered.

I am not sure how I can explain more (sorry about that!), I just live by somehow and stopped worrying about it. I know that it is out there and probably will get me in the end (and probably the social security payments that I am making are just a waste :) ), but there is nothing I can do about it, except for taking my medication and visiting my doctor regularly.

You probably know her, but in case you dont maybe Terry Wahls books are useful for you

Thanks for the perspective. I appreciate it.

And I wish you well.

At 38 (almost 2 years ago) I was diagnosed with rheumatoid arthritis. I lived a relatively healthy, "normal" life until I woke with extreme joint pain one day. The diagnosis rocked my world. I went (and am going) through the usual stages of grief. Before I was diagnosed but after the symptoms appeared I went to a bad place. After diagnosis I still mourn for my old life. When I have a "flare" (joint pain) I dive into depression, not knowing if my medication has stopped working, my condition has gotten worse or some other factor (diet, stress etc.)

I think about my disease every. single. day. I worry about my kids, and my wife. I don't want to be a burden to them, and I don't want my kids to have this horrible disease passed to them (there's a genetic factor). I worry about my future. When the pain is bad I have a hard time working (typing, using the mouse, sitting etc.) which has me thinking about what happens when I can't work at all.

I could write a novel, but I just wanted to say that in a nutshell ... life goes on. I now have a greater sense of empathy for others dealing with pain, and also realize that even your loved ones can't fully understand your pain - it's yours, and yours alone to bear.

I'm very sorry to hear that. As someone who has arthritis my advice to you is to eat healthily, manage your stress, and don't forget about physical activity: therapy, walking, biking - listen to your body, and see what works for you. All the doctors I've been to said that the key thing to prevent the illness develop further is the activity.

I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am able to hide symptoms quite well. Even when my kidneys failed, I was able to schedule my life around my dialysis appointments.

One of the biggest things that I notice shift as I grow older is that I no longer package my illness and my life separately. I think there's a tendency to treat chronic illnesses as acute and only focus on them when severe symptoms arise. As others have mentioned, that almost always leads to burnout. I regularly packaged my illness when I was in undergrad (worked full-time, went to school full-time, and then spent the remaining hours either sleeping or on dialysis); do not do this.

I don't think you can really completely remove the stress but eventually it stops becoming the highlight. It's almost like tinnitus, it's there all the time but there are large swathes of times when you successfully ignore it.

Your world gets a bit smaller. You just don't have the mental energy/ability to engage the same number of people/events. My social life definitely shrunk when I was on dialysis. It opened a bit more once I got a transplant, but not terribly. You still have a lot of concerns because after transplant, you're immunocompromised for the life of the kidney. Going to events becomes very stressful because of the risk to your health (Covid is a nightmare).

At the end of the day, you have to REALLY pick what you do with your time. It's like you're a cellphone with a broken battery that only charges up to 30%; you can still do all the things you used to, you just run out of juice a lot quicker.

Can I contact you ? If so how?

Sure, I'm @ayushpokh on twitter and IG.

I have ankylosing spondylitis, a form of arthritis that mostly affects the spine but for me also affects my other joints. I used to work out constantly in high school until it got worse in college and I could no longer tax my joints that way.

I live with it by trying to do as many healthy habits as I can and reducing stress as much as possible. Healthy diet, good sleep, meditation (<- massively helpful to me), physical therapy (the gentlest exercises I can do without causing pain to any of my joints). I also just try to be a bit kinder to myself. When I was younger and unaffected, I was certainly more arrogant about life and pushed myself to the limit in a variety of facets and took it hard when I didn't achieve something. Now, I try to live the healthiest and happiest life possible and not get angry at myself when I cannot focus or am tired.

I live with pain in my joints everyday, but I still consider my condition mild compared to many who have autoimmune arthritis.

I just try to live the healthiest life I can and remain hopeful for a better treatment in the future. It's being working well so far :)

Hi there,

Really sorry to hear about what you go through. I was diagnosed with AS almost 15 years ago. Not sure what country or health system you are under but I'm in Austria, and treated with a medication called Simponi. https://www.simponi.com/ankylosing-spondylitis. It's a TNF-Alpha blocker and as far as I understand it damps down the immune response in certain cells that cause the inflammatory response. It's pretty good stuff. It's not 100% effective and I'm not cured and I have my bad days. I had to go through a few hoops to get on the stuff but the health system in Austria is pretty good.

I'm also very active and do most stuff I want to including surfing, snowboarding, dancing, and hiking decent mountains. There was a time when I stopped and thought it was all over but in the end I said fuck it. I'm going snowboarding and I'm going to make sure I'm healthy enough to do it. Most mornings I wake a little stiff. Two days surfing in 8 degrees C water will do that ;). But doing some stretching and relaxing before hitting the keyboard and coding can loosen me up for a days work.

I wish you the best of luck and health managing your situation.

Regards

Hi, thanks for your reply and also sorry to hear that you're dealing with AS.

I'm in the US but I have good insurance. I'm very familiar with TNF-Alpha inhibitors as I have tried several. I started on Remicade which actually worked, but my rheumatologist at the time foolishly switched me to Humira for the sake of convenience. Once I switched, it did not work anymore nor have I had any response from a TNF inhibitor since (switched back to Remicade and also tried Enbrel). I switched to a better rheumatologist who explained to me that if you start and stop a TNF inhibitor, they may never work again as your body adapts to the medicine.

I don't mind though, I have health anxiety and got a few weirds symptoms and infections on the TNF inhibitors. Many patients lives are changed by TNF inhibitors and those therapies are game changers in rheumatology. For me, however, the medicines scare me because of the side effects I had and don't work anyway.

I also tried sulfasalazine but had the rare side effect of falling white blood cell counts. Given the level of my disease activity which has been radiographically slow and that my day to day pain is manageable, I prefer to be off medicine and deal with the pain.

I still love to ski when I can and will still do those activities which bring me happiness (hiking, dancing, etc.). For me though, I get tendonitis when starting or attempting really any form of regular exercise.

Thanks for your reply and I wish you the best in your treatment.

Sorry to hear what you’re both going through, arthritis sucks.

I was diagnosed with psioratic arthritis a few years ago. It’s well managed with Humira, a similar biological treatment which is thankfully free in the UK. However I’m still in pain most of the time and it occasionally flares up. Those days I feel incredibly tired and awful all over. Find it hard that I don’t know on any day whether I’m going to be okay or not.

Not sure if it’s the same with any other types of arthritis but the thing I’ve found that makes the biggest difference is exercise, especially on those days when I’m feeling terrible. Used to go to the gym pretty much every day, but post COVID it’s hard to do a similar amount of activity at home.

Hope you both continue to manage your conditions, it’s not always easy.

It surely must depend on the chronic illness and on the personality of the sufferer, but I imagine ultimately it comes down to accepting what you can't control and making the best of what you can.

I have CFS. Two people close to me have MS, and another has pretty severe UC and related autoimmune disorders.

Everyone on my list seems to be bearing up pretty well, knock wood. All of us have been managing these conditions for upwards of fifteen or twenty years now. Each of us had to get used to the idea that our lives would be different from what we imagined. But each of us is still living, and still doing things that seem worthwhile to us.

For all of us it seems like the hardest part was the months right after diagnosis, while we were grieving the life we thought we were going to have and getting used to the one we were apparently going to have instead.

But the adjustment can be made. Some of us, at least, have made it.

It helps to have friends and family that understand.

Forgive yourself for not being able to do everything you want to do. Learn to say no. If your illness has a predictable progression, start now in trying to redesign your work and hobbies to still be things you can do in ten years.

I can no longer do karate, my main hobby for over a decade and in which I have a second degree black belt. This is among my greatest regrets as I partially picked it because I thought I'd be able to do it until I was in my 70s. No such luck, alas, life is unpredictable.

I can no longer always work a full day, so I started a consulting company to be able to work at home on a schedule that aligns with my health rather than a clock.

I can no longer play the piano, give massages, do origami, or use a mouse comfortably. The primary emotion at losing these things is often grief. Acknowledge that and be okay with being sad about it but get therapy if you need someone to talk to.

There's no shame in it and it took me easily two years to learn to forgive myself for turning down invitations from friends to do things.

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps.

Three things that I do to deal with this:

- ignore: most of the time it's not top of mind; I can feel it always but don't think about it always.

- keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see if there's anything new that can be tried to mitigate it. This is something of a double-edged sword though, as it is eventually paired with another crushing disappointment.

- remember there is a natural end to this: one day I'll be dead and it won't matter any more, it's temporary in the same way that everything is temporary. And if I get fed up with it all and want to leave early, it's doable as a last resort. A literal last resort, really.

I've also developed chronic lower back pain and tinnitus in the past 5 years and deal with those in the same way.

It probably won't help you diagnose yourself but my 8 year long migraine was PSVT and having a very unstable blood pressure as a result. Neurologist asked how often I had a migraine and I said "once" and then he asked how long "4 years so far". The cardiologist was much more help when we figured it out eventually. Heart surgery fixed it.

Chronic pain on that timeline does a lot of harm to your physical and mental health. I'm still re-learning how to relate and respond appropriately respond to pain as a stimulus. I'm dangerously used to ignoring it. Empathizing with other people's pain took years to re-learn despite recognizing my failure fairly one in the process. Feel free to email me ect if you want somebody to talk to. brendan.benshoof@gmail.com

Hi -

I'd like to go into a bit more detail than just mentioning this out of the blue - unfortunately in a bad spot to do that right now.

On the rare chance you for some reason haven't heard of it already - look into Cerebrospinal Fluid Leaks

https://rarediseases.org/rare-diseases/spontaneous-intracran...

https://youtu.be/QyvWxobqKrc

https://www.mdedge.com/neurology/migraineresourcecenter/arti...

I had a chronic headache that lasted 17 years, so I feel your pain. I know you probably tried everything, but it might be worth trying the random thing that ended up getting rid of my headaches completely. 30mg of melatonin every night. Yes, this is 10x the recommended dosage of 2-3mg. But it turns out there's some random chemical imbalance in my brain causing these headaches. It's not that documented but there are studies.

This worked for me almost immediately after the 2nd night. The euphoria of not being in pain lasted months. From one person who lived in constant pain to another, don't give up!!

If you haven't tried it already, given that you also have lower back pain, try a posturologist, if you can find one... It's hard to find much info/practitioners. I'm also not sure how legit some are. Usually I would avoid non-conventional treatments (though I have been taken by family to everything from osteopaths to chinese medicine practitioners), but previously similar fields (e.g. chiropractors) had sort of helped, so I went. It has literally changed my life. I had chronic headaches since I learned how to speak (they were not so often then). Me and my family had tried everything. I had progressed to the point where it was 24/7 pain, highly depressed, could not work/go to university. Within the month my pain was down 25%, within a year I was 50% better overall, no more 24/7 pain, started studying. Now I'm about to graduate. I still go once a month but am 90% better. I'm also not downing pills like crazy. I was on 3-4 a week (this was just to numb the bad episodes), now down to 2-3 a month (mostly due to me overexerting myself).

It does not work for everyone (it helped some family members with back pain but not others or not immediately so they stopped going), but can't hurt to try. It is very similar to going to a chiropractor but "softer" is how I would describe it. There is not as much cracking and popping. Half is stretches. There's lots of checking specific points for pain, also the whole body is looked at. And unlike chiropractors or massage therapists there is a noticeable change in mobility and posture and other things (for me decreased light sensitivity) after a visit.

I meant homeopaths, not osteopaths. Osteopaths might actually be quite similar to what I'm talking about but am not 100% sure.

Given it's been 20 years I'm sure it's not anything obvious, but the main reason I get headaches is dehydration or blocked sinuses.

Other likely reasons would be caffiene/sugar spikes.

What is your general state of health and diet like, and stress levels?

Have an emotional support network in place. My spouse has a chronic condition and her family is almost useless, and my family is worse than useless. Luckily we have each other and I have very flexible work conditions. She's also found Facebook groups for people with the condition. (She'd really love to get off of Facebook, but it's the only place people with her condition meet online.)

I'll share a bit of advice she got from the groups she reads online: "Prioritize your well-being over explaining yourself to people who don't care about your well-being." It's understandable that not everyone has heard of or knows the details of some of these rare conditions. It's crazy how some people (even close friends) will react when you explain the reality of your situation to them. Don't put up with it. Just move on.

I rearranged my life to make protecting my health and caring for myself my number one priority. This includes working from home with flexible hours.

I blog and I run a bunch of Reddits in part to try to spread the word about how to do this well and in part in hopes of developing an adequate income for myself. I have about six years of college. I can write. I know a bunch of useful stuff. But I can't work a "regular" job and punch a clock and yadda.

I learned a lot about how the so-called "immune system" works and I take a diet- and lifestyle-based approach to dealing my condition as a superior approach to a primarily drugs- and surgeries-based approach.

I'm not anti-drug. I'm pro-health.

People routinely think that my focus on doing what is more effective means I'm some high-handed, judgy anti-drug person in the extreme and this is absolutely not true. It is the opposite of true.

I was thrilled to pieces to finally get good drugs when I finally got a proper diagnosis after a lifetime of being dismissed as some kind of hypochondriac. But eating right for my condition and living "defensively" to protect my health made drugs less and less necessary and my quality of life is just better this way than it was when I was on scads of drugs.

Why does the immune system warrant scare quotes? Or are those some other kind of quotes?

Unlike, say, your circulatory system or digestive system, your immune system is not a separate set of distinct and readily identifiable organs with a specific and isolated function of "immunity." Your skin is part of your so-called immune system. Your gut is part of your so-called immune system. Your respiratory tract is part of your so-called immune system.

Figuring out that the system as a whole is generally designed to keep out invaders and there is no separate distinct "immune system" was enormously helpful to me in understanding how to effectively cope with a compromised immune system due to a genetic disorder, so my underlying condition cannot be fixed. But there is a lot I can do to shore up the functioning of my impaired body with the right mental models.

See also:

https://qht.co/item?id=24033181

https://qht.co/item?id=24015957

> my underlying condition cannot be fixed.

Yet. I don't want to give you false hope, but I believe CRISPR-Cas9 to be a game changer of the sort that we will classify time are pre- and post- CRISPR-Cas9. Until the technologies to fix your genes become available, you're already doing the best you can to take care of your body (I've read some of the things you wrote).

What I'm doing is game changing. CRISPR may provide hope for other people with the kind of diagnosis I have, but my health is in good shape and I see no reason to take chances on something that could have serious and terrible side effects.

My biggest problem currently is that I'm dirt poor. Trying to solve that is my current focus.

> My biggest problem currently is that I'm dirt poor.

You wrote in 2009 that "Rewarding people for having serious problems tends to grow those problems". Based on what I read written by you, you are a pretty smart person, so, assuming that you aren't poor since a short time, what is your reward for being poor?

As stated above, I have a serious genetic disorder. It's supposed to be killing me and it's supposed to cost up to a quarter of a million dollars annually to treat under conventional medical approaches.

There's no reward for being poor. My poverty hasn't grown. I used to be homeless. I've gotten myself off the street.

I've saved an estimated $9.5 million over the last 19 years in terms of what should have been spent on medical care for me and my oldest son but wasn't because of the diet and lifestyle based approach we have pursued.

I would like to get support for what I'm doing via Patreon. I face credibility challenges and sexism is a factor and yadda.

I would appreciate it if you would leave me alone. Someone who claims to be familiar with my writing and can reference something I said in 2009 but has zero understanding of the reasons I remain poor and then asks questions like this that amount to victim blaming isn't something I need in my life at all.

Thanks for clarifying and (of course) good luck. For what it's worth, I'm sorry you have to live with that s*t.

A few things that aren't obvious come up. Like how stoicism can get you more help. So what you do is you say you're feeling great. Spend time with others talking about nonsense. Then you ask for help only when it really counts.

This seems selfless but it quite shrewd really, most people actively enjoy helping somebody occasionally but loathe becoming an actual martyr for somebody. When you're vulnerable you can't really let your health depend on somebodies honor and grace under pressure.

The help you receive is a limited resource. If you piss people off or stress them out until they're sick themselves you're gonna be vulnerable when that tank is on empty. You can't evaluate if it's worth to take a day off sick or ask for help without considering the impact it will likely have on others. You have to ration and time things correctly using stoicism. It may seem a bit lonely and fake but it's what's best for everybody.

I suffered from terrible psoriasis. The medicine was expensive ($100 copays) and it was constantly itchy, flaking, and ugly.

In my case, it was stress related. I quit my job, took another job that paid more but with less stress. And everything disappeared over the course of two weeks.

I realize this doesnt work for every disease, but some are stress related.

Stress will eat you alive. I didn't realize how badly a situation that was subjecting me to a constant amount of low-level stress was affecting my health until the source of said stress was removed.

My tolerance for toxic people and employers is pretty low these days, I know better than to try to "suck it up" anymore.

> My tolerance for toxic people and employers is pretty low these days, I know better than to try to "suck it up" anymore.

I say this a lot, but one of best things you can learn is when to remove yourself from a toxic situation. You aren't going to win points by sticking it out, you're just going to put your health and ability to cope in jeopardy the longer you're in it.

What stress did your old job have that your new one does not?

My last job received over $50B USD of government bailout funds between 2008 and 2009. There were accusations of accounting impropriety and two senior executives were prosecuted and imprisoned a year earlier. I worked in the quant/pricing/accounting group in technology and product. We also finalized figures for financial reporting for this public company. There were dozens of people pointing fingers at each other trying to shift blame on who was responsible. There were leaks to the press, leaks to authors, accusations, memos, the works.

In one case, a person found a major accounting issue where prices were faked and suddenly found himself facing sexual harassment claims from the very department that was responsible for the fake prices. In 2009 and 2010 people were desperately clinging to jobs and that meant stabbing anyone else that could be stabbed to get the spotlight away. This is mostly in Quant/IT/Ops at mid-senior'ish levels (below Managing Director.)

Every single decision was memo'd with signatures. Worse, we weren't in the group of people making millions, so if we got in trouble it wasn't as if we had millions of dollars worth of defense attorney costs saved up.

One lesson learned is that if the money is good, there are probably some shadow liabilities. I mean, $300k/yr (mind you, this is 12+yrs ago) is great, but not great enough to be worth this stress.

I took a job in tech paying the same in annual TC. There is some delivery stress, but not huge. No investigations. No financial reporting improprieties. No depositions. No memos. No execs in prison. NO MORE PSORIASIS! YAY!

Mostly stress over getting some random Linux driver working, pretty nice!

My 1-2x weekly migraines are now ~1x a month, ever since switching to a lower-stress job.

This is a lot less severe than the others in this thread but to reflect on a far less worse issue: I try to hold the condition with compassion as much as I can meet it. I have chronically dry and irritated sinuses that started about five years ago and nobody understands just how difficult it is to bear this thing. The continuing, endless persistence of it and doctor after doctor just shrugging their shoulders has really contributed to a low-level rage at the futility of modern healthcare mostly.

Meditating on the essential impermanence of this body has helped to a degree. But it takes some highly exalted states to separate self from the suffering part of the body and I just don't have a lot of time nowadays to get up to those.

Chemistry can help. balance its cost vs the cost of the stress making you worse / slowing your healing, and it may be a bargain worth making... or not. We haven't got Fukitol(tm) but the natural pharmacopeia offers many options and human genius has expanded that beyond the bounds of absurdity.

we mammals are good at ignoring things, too. Ignore the things you can't do, enjoy the things you can all the more. Ignore the things you can't prevent and ignore the regrets of the things you couldn't do.

I think that, even if you ignore or don't notice pain, it still will have, in the long run, some effect on your psyche. The same way prolonged background noise will turn you insane even if you're not hearing it. I think in a lot of cases, chronic conditions are co-morbid with depression not because people actively weep over being in pain, but because a constant pain signal ends up having an effect on how the brain is wired. In my case, even though I ignore/don't notice pain most of the time, it definitely increased my general sensibility to regular pain and discomfort, physical or psychological. Ignoring your own body also leads to derealization, also in my case. But if I sit down and practice mindfulness, it makes it easier to deal with. Something I think about often is that picture of the Tibetan monk setting himself on fire. He's not ignoring the pain, he's very much aware of it, but he's detached from it.

I think about that photo often too.

Diabetes - since my mid-30's - now am approaching 50. Have maxed out on all pills. Very soon will be put on insulin. Did lot of running for a decade or more. Diet control is my weak point and toughest to be disciplined about. Not that I gorge on sweets/candies - but rice, fried food is something I cannot do a clean breakup with. But as and when I can - do regular exercise (running) and diet control. Very difficult for me personally. Hope once I am on insulin - I can still lead reasonable decent life past 80. Not sure if I know anyone who had diabetes in their 30s and lived past 80s with reasonably good health. :-)

I was diagnosed 3 years ago,A1C was 11%. Doctor gave me 2x Mitformin and other meds and said I should probably start insulin within 6months.

I never took the meds they gave me. I started a keto diet righ away and never looked back. Now my tests have been all showing I'm in pre-diabetes range.

I eat healthy and walk everyday. I don't miss sugar anymore and I do have fast food once in a while.

What I eat: - Chicken, fish and some meat - eggs, salad, cheese, milk, tea, coffee - sugar free biscuits and sometimes sugar free Ice Cream - a lot of water - vegetables, and a special bread, no rice

I also found out that my insulin get released during lunch and later dinner, but not much during breakfast or after lunch. So I time how much I eat accordingly.

The nurse didn't believe her eyes when she saw my results and asked me about what diet I used.

I did prick my finger a LOT in the first 3 months but it was worth it, as I now know exactly what to eat and what to avoid.

I used a forum extensively (UK oriented) to follow my diet [1]. Hope this helps.

[1] https://www.diabetes.co.uk/forum/#diabetes-discussion.12

Edit: above is not a medical advice nor should you follow it to beat diabetes, it's only my personal experience.

Fasting should help. A friend of mine reversed the process already in his 50s

Fasting might be a bit risky at advanced ages but reducing carbs (not only sugar) to the minimum for quite a while and then being very conscious about the intake in the future is the key to success. Also you'll lose some weight which can be good if you're not that slim.

Source: two family members on his 50s and 60s completely cured, one was about to use insulin and the other one was using it already for about a year.

I am vegetarian who eats eggs + dairy products; no meat or fish. So it is bit challenging to reduce carbs - but I hear you - I agree - reducing carbs should definitely help. Thanks.

... have you looked at carnivore ?

Intermittent fasting? 16/8 or something different? Thanks for any info you could share. I know this is not health advice forum - but still it is encouraging to hear positive anecdotes/references from others.

He started to do one day of fasting once a week, and then occasional 2 to 5 days once a more prolonged period. making such efforts also invited more discipline with carbs and made easier to reduce number of meals per day to two. Not sure about vegetarianism, - another friend had to abandon it in order to overcome diabetes.

I don't think they invited you to give them health advice.

Incoming downvotes...

Why should GP post at all then? Sounds like he or she has given up on something that some others have been able to defeat. I realize it’s hard to get over the idea that there isn’t a magic pill to “fix” you and allow you to continue treating your body/mind like a garbage can, and yah, big changes are hard. Looking for pity maybe?

To answer the original question?

"I realize it’s hard to get over the idea that there isn’t a magic pill to “fix” you..."

Is that deliberate irony?

Found another one...

I meant it unironically when I wrote it. It’s a garbage attitude- we aren’t machines, meatbag

I don't think we have rank subordination here

I was diagnosed when I was 30 (A1C of 13). After maxing out pills (7 a day between Metformin, Glimperide, Onglyza, Invokana), I went to multiple daily injections, and then a pump with CGM. The pump is life changing as far as getting better control. It still isn't perfect (latest A1C of 7.5), but it makes a big positive difference.

Thanks for sharing - at what age did you start insulin - if you don't mind sharing and how long it's been since you are on insulin/pump now?

I'm 38 now. I have been on the pump/CGM (MM670G) for just under three years. I was on pills for 2-3 years, at first the metformin and glimiperide were enough and I got my A1C back to the sixes; but I maxed those out and it was climing agian. Then maxed out Onglyza, then maxed out Invokana at which point I switched to the pens.

The problem with the pens is that I would need 25 units of basal insulin and 25 units of the rapid acting insulin. You can't "undo" your 24 hour basal injection; so if you don't eat enough carbs or exercise too much you can go low. The pens are also not nearly as precise as a pump for delivering the rapid insulin.

After my A1C climbed back, my endocrinologist prescribed the pump and CGM closed loop system. We did a blood test that showed I was T1, which was enough for United Healthcare to pay for the CGM and not just the pump.

fwiw you can have a look at https://www.virtahealth.com/. They are reversing T2D with ketogenic diets

Not ‘big C’ chronic - but I’ve got Celiac (fine until I get gluten-Ed) and had a DVT a few years back.

No one cares about your health more than you. You must be your own advocate in how to maintain baseline health.

Also, you’ve got to reserve holiday / pto / downtime for when issues pop up. Life doesn’t go to 100% like it did before these issues.

It's not easy. I would like very much to be normal, feel normal and enjoy normal things. I still have hope that someday I will. I still find myself envying people who do not have to deal with the stuff I deal with.

I would not wish the pain and suffering of my daily life on anyone. Even those who are truly evil.

As for dealing with it, meditation, medication, and moderation. Also having family and friends who are supportive of you is helpful as well. I am no longer afraid of taking days off to relax and hopefully feel better the next day.

I had an allergic reaction to fluoroquinolone antibiotics when I had a kidney infection. It resulted in visual disturbances, snow looking at bright colors and floaters. Some neurological symptoms, fatigue, numbness, tingling. Some musculoskeletal issues, such as tendon/muscle pain and cracking in many joints. This has been a constant struggle for 8 years now. I have met others who had the same reactions, some recover, some find help through diet, some can't walk at all. Doctors usually gaslight you, even though all these symptoms are now on the black box label, which these antibiotics carry.

I have gotten some relief. Initially, could not walk for few weeks due to severe pain. Remote work helps. However, as long as I keep consistent eating schedule, low sugar diet, and eat clean I can my symptoms pretty mild and can do enough to feel "normal". Sometimes I do get hit with nasty tendon flair up and need to brace it. Brain fog is gone and neurological symptoms have improved.

Apparently, there have been cases of individuals recovering after 10+ years. There was a doctor who did a lot of work with people affected by FQs but he unfortunately passed away. Thankfully, surgeons and other doctors are now coming forward discussing the issues and trying to figure out how the damage can be reversed.

There is plenty of good info in the other comments but the two things that help me are diet and meditation (I have Rheumatoid Arthritis and it also seems I have Gluten Intolerance/Celiac (cause/relationship??)).

I think with any chronic illness diet plays a big part as when your system is down the food we eat doesn't get processed as well as we like. That is, if you eat junk/processed foods your body can't deal with the 'artificial' components as well as it can real food (no or little human interference). The side effects of poor food choices for me are lethargy and 'brain fog' along with exacerbating my body pain levels. On these days I no longer fight it and just rest. I recover much better/quicker this way rather than trying to fight through it.

Your illness can consume you at times and this can be quite depressing. Learning and practicing some type of mindful meditation can bring you back to some kind of normal, even just 10 minutes a day can make a big difference and I do notice this if I skip a day or two!

Stay well.

Well since I have had problems my entire life, its usually not stressful in the way I would normally use that word. Like as in cortisol levels spiking from something unexpected or something.

But it does cause me problems. What has helped me a lot is working from home. I have been doing that mainly for like ten years or more. Not having to deal with the stress of commuting and possibly getting that much more sleep and having 1 or 2 hours of extra time, is a huge deal for me. Because the biggest symptoms with my health are fatigue and needing to go to the bathroom a lot from the IBS.

But you did use the word stress. I think that is the biggest adjustment I have made compared to most people. I have deliberately reduced a lot of the causes of stress that people normally have in life. I have a greatly reduced social life. Don't own a car. I actually moved to Mexico so that I would be able to easily save money.

But the weird thing is because I have always had asthma and acid reflux (which in my adult life has really been a significant breathing issue especially at night etc.), I suspect that most people often think I am just lazy or something. Especially since those are common problems and lots of times I can operate just fine for hours. I just usually look tired and sometimes need breaks to crash out for a couple of hours. But people don't see how tired I am because I don't go out much or go on video.

I was actually hesitating to say that I have those issues. Because a lot of times they end up being fairly minor for other people with good treatment. For me, in my adult life the acid reflux has been a big deal for breathing and waking up tired and my first surgery attempt so far was not successful.

But people generally don't cut me any slack for it. And with a flexible work-from-home schedule, I don't need to ask for slack.

I was diagnosed with type 1 diabetes or LADA in my early forties and two things helped me deal with it. The hospital put me in a room in the oncology department. Seeing the other patients I was sort of glad I was there with 'just' diabetes and not cancer. This made it easier to accept.

After a couple of months of living with diabetes I created a simple app to enter the numbers, glucose level and insulin units, involved in managing diabetes. Among other things the app showed percentage scores of how much the glucose measurements were on target. That little bit of gamification was exactly right for me. Nowadays it's more like autopilot though.

Still it feels a bit awkward when I'm out having dinner with people that don't know I have this. In the first year or so after the diagnosis I would go to the bathroom to take the glucose measurement and insulin shot. Nowadays I explain the situation and take my shot sitting at the table. So far people have been cool about it.

The biggest challenge is giving yourself permission to not be 100%. Ableism applies to yourself too. Non-visible disabilities are insidious with the amount of mental trash you will tell yourself. i.e. "Well I should be able to do X."

If yesterday you were able to wipe your own ass, but today you can't; That's what it means today. Don't dwell on the past, remind yourself of what you still can do today.

Be gentle with yourself.

I guarantee that you are beating yourself up worse then other people are.

Also, this is when your domestic support network matter the most. You are at your most vulnerable.

And one more thing, Chronic Illnesses bring all their friends. If you have one now, you will have more later. Especially if it's an auto-immune disease.

Do you own research, and be informed when you goto the doctor.

Re-evaluate your expectations as often as you need to. Remind yourself, you are not alone. Find solace with others that share your similar conditions. Be kind to yourself. Be gentle with yourself.

You learn strategies for getting through some days, some days nothing works, and some days are pretty much completely normal... and you never get enough normal days.

A good healthcare team really helps, but it's pretty rare to find in America, and even harder to keep hold on when insurers change and coverage is all over the map. Therapy helps some - I don't get much benefit from the group stuff, but one-on-ones, knowing someone actually understands and believes you is a huge boon.

I personally find no reason to not share my experience and I'm honest when I'm having a bad pain day and someone asks me how I'm doing - there's a reality that pain colors moods and decisions, so it's worth others knowing. If you can't trust your coworkers or employer not to discriminate against you for that, then you're probably working in the wrong place.

But, one day at a time is the only way you really can take it.

I have eosinophilic esophagitis, which is a rare autoimmune condition. I am both lucky and unlucky, in that most sufferers discover they have this later in its progression, when they have difficulty swallowing, but I discovered mine early due to near-constant and severe left side chest pain. This is an unusual presentation, but it goes away when we get my EoE into remission and comes back when I relapse, so we're pretty sure it's the cause.

I have come in and out of remission over the years. Unfortunately, my case has been quite difficult to keep in remission, so I live with left-side chest pain most days. There are a wide variety of other exciting symptoms.

Before I got sick, I was a healthy person. I worked out five days a week. I traveled internationally. I ate widely. These have all become much, much harder.

So what I would say to people who are not chronically ill: it can happen to anyone. It can happen any time. All that stuff you think happens to other people, it can happen to you. I literally woke up one day in pain, and that was it. That was the end of the good part of my life. One day I was fine, the next day I was permanently not fine. I was 27. I worked very hard through my 20s thinking I had time to enjoy life. Don't put off living. This can happen to you.

On the whole, as others have said: one day at a time. You just keep going. You will not believe how much suffering you will be able to put up with and keep going. On bad days, I tell myself that I can still go for a walk. I can still watch a sunset. I can still pet a dog. Get a therapist. Talk to the therapist.

Other things that have helped me: extremely careful dietary control. Reminding myself of the hundreds of extremely more horrible diseases I don't have. A care team of doctors who I trust, having replaced the doctors I didn't trust (for instance, the first doctor I saw, who told me it was all in my head).

Chronic illness is a very hard experience. I do not recommend it.

My wife has ME/CFS. Once it started to become unbearable for her I decided that we'd rely on just my income and she would stay home. Certainly she'd prefer to work as well, and staying home is still not entirely restful for her, however it's better than her pushing her body through hell.

Don't have a chronic condition (as far as I know) but have a child with a minor autoimmune issue. Having someone you care about affected provides a somewhat interesting "sideline" perspective on the best course of action. Here is what I did:

1. Try to learn what the world knows. I've read 2 books and close to 100 scientific papers ranging from 1980 up to 2020 about the condition. This helps placing the incident as a point along the timeline. You will see how people in the past coped with it, what are the most promising treatments today, and what is coming up around the corner. Also a lot of insights into what might have caused it and what changes can be made to slow it down. Also you will most likely see that the future is bright. The medicine is full of hot upcoming things. Training t-cells to fight cancer, selectively suppressing certain pathways to turn-off auto-immune responses, healing gut bacteria to get rid of sub-clinical infections, etc.

2. Find the best doctor who takes a personal interest in your case. You should be able to go to your doctor and discuss any new development, any changes you noticed, and get a reasonable advice back. The doctor will compare your case with other persons he/she is treating and will be able to give you a lot of advice, even some anecdotal wisdom.

3. In addition to your local doctor, try identifying the leading figures that are investigating the disease across the globe. They typically attend conferences which you can find online, or write blogs on some website, or other things like that. They will also respond to emails, especially after seeing that you did your homework and know about their work.

4. If the disease is manageable - do what you can to stay healthy. Eat healthier, sleep healthier, avoid stress and excess pollution. Most diseases have some individual-specific corners to them. In this case experiment until you find what works for you.

5. For personal peace of mind, think about the big picture. Do not compare yourself with others. Rather think about what you are able to achieve for this world compared with the case of not being born at all. You will find that it is substantially better, for the world and humanity, for you to be born with the condition, than to loose you. Concentrate on that and do your part, do what you want, do what you can.

In the end I think that onset of some illness might be a hidden blessing. Someone might be healthy all life, seek pleasures too much, and waste a lot of it on hedonism. A durable yet uncomfortable disease can provide direction and a boost in motivation. And if the disease can be managed by a healthy lifestyle, chances are, you will turn out to be healthier than the average person on the street.

I love #1.

People who go beyond WebMD, and keep digging to the point where they can have a conversation with a specialist, more as a peer than as a patient, are a big deal. It's not easy, and I think it's unreasonable to expect that everyone can do this (dig through and understand the primary literature), but if you can it's a big deal.

There are so many nuances and complexities and tradeoffs in managing chronic diseases that if you can sit down and make informed decisions yourself and then talk them over with a healthcare provider in a non-adversarial way, it really does put you in the driver's seat as much as possible.

It opens up #2 and #3 as well.

Writing (and reading!) my thoughts in a journal really helps in a few ways:

* It avoids getting into a negative cycle. When I feel good, I read what I wrote when I wasn't and reflect. Next time I'm feeling not well, reading how I dealt with the situation in the past helps me from dwelling on negative thoughts.

* I make notes about effective actions that help me feel better (physically and mentally) so I can take action without thinking too much.

* I write about what I want to do do in the future when I am feeling better. This helps to keep me positive and also helps me make effective use of the good times.

For context, I have to deal with eczema that can get pretty bad at times.

Last year I suddenly had severe atypical urticaria plus arthritis out of nowhere. It looked way worse than how it felt, but it was a little uncomfortable.

Today is more manageable. I improved my sleep schedule, diet, alternatives exercises, sun exposure, etc. All these actions reduced my stress levels. The funny story was that all doctors were saying "your body is extremely stressed". I didn't felt any mental stress at all.

In my opinion daily stress is strongly related to how quickly and how strong the chronic illness develops. I know it sounds cliche, but optimize to a low-stress life.

For me personally, I had to force myself to stop accepting the status quo, the dogmatic ideals and start studying my own issues. I spent a bit of time on nih.gov and many other sites to learn about specifics and also learn a lot more about the human physiology. I never imagined in my youth that I would have spent so much time learning molecular biology and the human metabolism.

What I learned at a high level? So it turns out that if they only people you talk to are doctors, then your options will be limited. Doctors don't have time to research everything and most of them are not scientists. There are also some cases where doctors may subconsciously ignore options that may conflict with their business model. In many cases doctors will only suggest what their industry knows they won't get sued for and what insurance companies won't fight them on. In my case, I was told I would be on BP meds forever and it would only get worse with time and I could expect to not last more than a few years. Well, that was a load of BS and that came from multiple doctors at multiple hospitals. It turns out, you can de-calcisfy and de-plaque arteries and reverse damage to them. It's actually not at all difficult. I have lowered by over BP 20 points and I am still making progress.

TL;DR Read up on your issues until you know more about it than the scientists that have researched it. Take the time to learn some biology and what aspects surrounding your condition that you can control. Your body is the most important thing you own.

How does one actually go about that process of reversing damage to your arteries?

Completely agree. For something that's going to affect the rest of your life it only makes sense to invest the time to become an expert on your issue.

I lost my entire former life to chronic illness. I got to the point where death was imminent. Just managing symptoms and living whatever life I could wasn't an option.

The best advice I got was to treat it as if I were at war. Nothing else mattered until I won the war, because if I lost, nothing would be left.

This meant I had to find a way to reverse the progression of the illness, which meant an accurate diagnosis and a cure. To do this, I used my environmental engineering background, free access to research (thanks to open access and sci-hub), ability to communicate with others in my position (thanks to social media), and ability to communicate with some of the best biochemists and doctors in the world (thanks again social media).

It took about 4 years of 60+ hour weeks studying biochemistry and anatomy. Well over 10,000 hours. And this is a conservative estimate. My ability to focus on studying was uncanny. It was survival instinct, but instead of focusing on a predator I was focusing on knowledge. I could barely think about anything else even if I tried. Entertainment became boring to me. Relationships became meaningless. I had to find a cure. This was in addition to the previous 10 years of 5-20 hour weeks studying. Part of me knew by age 18 that it was not going to end well unless I figured out what was going on, so I was always learning about my symptoms.

After all that I came to an accurate diagnosis and cure. This was not a linear process. It happened in fits and starts and I went down tangents many times. These tangents all tied together in a unified understanding once I found the root cause.

I've been pursuing treatment for almost 3 years now. Progress has been slow, but nothing short of miraculous, and I expect to make a full recovery within the next 2-5 years.

For those curious, as I always get asked this question on HN, my diagnosis is chronic mercury toxicity, and a key part of the treatment is chelation therapy with emeramide. Emeramide is currently in phase II clinical trials and will probably be approved by the FDA within 5-10 years. The right nutritional supplements, taken in the right forms, and at the right time, is also key. That, unfortunately, gets very messy and controversial, and all the chronically ill people I know spend a tremendous amount of time trying to figure this part out.

Building on the comments of @notslow below, here's how I managed to defeat a chronic Leukemia dx some 32 years ago.

Borrowing from Sun Tzu, "know your enemy, and yourself".

Borrowing from Norman Cousins, "laugh your way to wellness".

Add to that the power of positive thinking, and those ideas helped.

It's not enough to just accept a dx, especially a life threatening one ("you have 2 to 5 years to get rid of this"); rather, in my experience, it pays to take ownership of your visitation; know all you can learn about it, and about how you are dealing with it.

Find the loopholes in your approach, and find something you can believe in; that belief, IMHO, is a component of whatever secret sauce will get you through the visitation.

In one case mentioned below, someone discovered an environmental cause - a mold. In my case, there were many other factors with which to deal; only those associated with my own behaviors and lifestyle were in my control.

I am back to dealing with a different chronic condition, using the same mindset, and recent data suggests I am on the right path. Thinking about writing a medium piece about these ideas.

I have migraines. 1 day out of 5 (on average) I have to take a triptan pill that has quite nasty side effects on me. Those however are still better than what happens if I don't take the pill. The condition also imposes some restrictions on the food I can eat and on my sleep schedule. I can't drink alcohol at all. I can't function in poorly ventilated areas.

Mine's not chronic yet, so I'm not sure how well I fit into this but I'll contribute anyway. My current efforts are to prevent my current condition from developing into something chronic, though to do so I have to live like it is chronic for the foreseeable future.

For me, it's mostly diet. No alcohol, no/low dietary fats while trying to make sure I get enough B12, iron and protein as I'm anemic and my diet mostly rules out red meats now. And for pain, some codeine (or when things were/are worse, Dilaudid) or acetaminophen or ibuprofen. That's about it.

My focus is on what I have and what I want to do from here out. The initial circumstances nearly killed me, and that kind of thing is, cliche as it may be, but nevertheless, enough to alter one's perspective.

In short, mine's a case of dietary efforts to prevent an organ from failing and pain management. So I do that and get on with it, no more spinning the wheels. I feel good when I'm moving forward with something else.

I've been dealing with a minor, but frustrating condition for the past few months. I don't know yet if it's chronic, but it very well may be.

Some of my thoughts have already been shared by others, but I try not to push myself as much as I used to do. I still try to do things I enjoyed before such as light exercise, taking long walks, and hanging out with friends (carefully, obviously, because of COVID). I might not go for a long bike ride, it doesn't mean I can't stay active without stressing my body beyond what would cause symptoms to flare.

The more I can keep my mind of symptoms by working, spending time with family and friends, and moving around, the less depressed I am.

I also try to educate myself on my condition/symptoms. I try not to diagnose myself or come to solid conclusions. However, I feel like having a greater knowledge of anatomy and physiology with regard to my situation aids in asking appropriate questions to my physicians and understanding their feedback.

My wife has "chronic daily headaches" (that's actually the medical term) for decades. Been to multiple doctors. Have undergone multiple tests. Have tried multiple medications. Nothing.

Just get through one day at a time like someone else said. And look forward to the sweet sweet embrace of death. At least that is what my wife says.

My girl has something very similar the only thing that seemed to help was a good pair of polarized sun glasses and possibly very low dose Adderall (currently testing but seems to help). Something about the low dose seems to cause the deep throbbing headache to get bypassed. *Not giving you medical advice but that's what we tried after the other stuff has failed.

This is a very stupid example I will give is completely benign but may motivate someone, with a punch line.

I had terrible issues with acne on my back and shoulders. They were terrible, painful, constantly being inflamed, bleeding all around. I couldn't imagine wearing a white shirt, going to the beach, pool, scars showing with short slieved shirts. People actually asked me what's wrong with me, some thinking I was self injuring myself with cigarettea. Doctors described it as one of the worst cases they seen, recommended all sorts of medicine (some doing more damage than good). Spent a fortune treating them and years.

At one point I embraced them. It's me, I stopped being caring. And they went... Psychotherapy probably helped, although I went because of completely different reasons.

I wouldn't write this, but replace acne with ulcerative coalitis, and you have my good friend's story...

Been living with a rare neuromuscular disease since birth. Might kill me early, might not.

I've learned to cope with it in hundreds of ways, just like people cope with their career in hundreds of ways, or their kids, or their marriage. It's a central faucet of my life. It's destructive as hell to shove it aside and try to "forget about" all the small, daily issues.

So I've learned to co-exist with it by doing the following:

--Like another poster mentioned, pay attention to the little things. Sleep, exercise, diet, stress levels. Treat your body like a spoiled little princess, and it'll be less likely to throw a fit.

--Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them.

--Educate the people around you. The stigma of chronic illness is generally less than the stigma of "that person who you can sometimes depend on, but then randomly blows deadlines, and appears to be hungover all the time."

If you're in a safe environment, talk to your boss. Talk to your coworkers. Tell them what's up, don't leave them guessing, because they're not going to guess something you like.

If you're not in a safe environment, GTFO as soon as possible, salary be damned.

--Educate yourself as well. Not knowing is the most stressful thing, and you can mitigate a lot of that stress by developing more knowledge of your disease. Try to avoid anecdotal evidence (random forum posts, ect), and stick to respected journals and textbooks.

--Advocate for yourself. I was misdiagnosed six times before they finally figured out my issue. If I hadn't demanded further testing, I would most likely be dead at the moment. (This is another area where educating yourself really pays off.)

--Choose a supportive partner. If they treat you like a hypochondriac, or aren't sympathetic to your issues, then get out.

(On a similar note, don't believe anyone who says chronic illness kills any hope of relationships. I have a fantastic partner, and have many chronically ill friends who do as well.)

--Keep a detailed diary of your symptoms and your daily activities, even when you're feeling good. This will help you figure out what helps, what doesn't, and what your tolerance levels are for activities, exercise, medications, ect.

--Stay on top of medical developments related to your disease, and reach out to any trials that may benefit you.

I could add a hundred other things to this list, but I think those are the important ones.

So yeah. Keep fighting the good fight. Again, and again, and again, and again.

(Edit: Took out some identifying info.)

> --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them.

Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bitterness subsides into a dull background noise.

---

I'm epileptic. I don't deal with it well at all. I hate it and it annoys the hell out of me. There is the giant, "what if" fear that overshadows pretty much everything I do, including going to sleep. Fortunately, I have a good pulse on how I'm feeling (i.e. if I'm going to have a seizure in the next few days), and I know what I need to adjust in order to keep the seizures mostly at bay.

Apart from medication, the most important thing to keep in check is diet. I've found intermittent fasting and low-carb/gi help the most, it's annoying to keep up, but if I fast in the morning (aka skip breakfast, or keep my a.m. meals keto), then I can generally coast and not have to worry about seizures too much, but if I eat a moderate amount of higher-gi carbs, then I will likely have a period of a few days where I have partial seizures.

Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain.

I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.)

Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for building up a tolerance for fasting?

I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you.

I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can.

I don't have any problems with blood sugar, and I don't get crazy hungry (I actually forget to eat pretty often, I find it more of an inconvenience, hah). I WFH so it's not like I burn many calories sitting on my biscuit anyway. My main problem with it is weight loss. I'm not overweight and I like to exercise, so I need to make sure I eat enough. Another downside (I'm guessing) is electrolytes or vitamins. Maybe I'm simply underfed but I seem more prone to muscle tightness/cramps.

I find I can break the "diet" regularly and not lose therapeutic effect. I do it 4-5x/week. I'm down to 1-2 partial seizures a month, whereas previously I was hitting 30+. I have neocortical TLE (likely focal cortical dysplasia, adult onset), so the partial seizure numbers tend to be higher than your standard hippocampal/mesial TLE. Overall my seizure control is pretty good lately. I'm hoping it stays good - but as you probably know, can't let your guard down.

I ended up here after failing to maintain keto and the low gi ("south beach") diets. They seemed to improve seizure control a bit, but I had real problems sticking to them. Fasting is all the rage now, so I figured I'd borrow the easy/good parts from both of those diets, while trying out a simple, loose version of fasting. I'm glad I gave it a shot. Good luck!

Thank you so much for all the advice! It's really nice to know that shorter fasts can still have an impact on some people. This has encouraged me to try fasting again.

And huge congrats to you on reaching only 1-2 seizures a month. I know how much time, research, and mental energy goes into reducing seizures. That is a huge accomplishment!

As you know, this condition is totally unpredictable, so it may just be a temporary lull completely unrelated to my diet. I also feel obligated to leave the "I am not a doctor" disclaimer. And good luck with your seizures as well. They're so awful

Oh for sure, but I admire you for putting in the effort to at least try to improve your condition.

And disclaimer noted and appreciated. :)

Good luck to you as well, my friend! I'll keep my fingers crossed you eventually get down to 0 seizures a month.

Ugh. I'm sorry for your circumstances. Sorry to everyone, really. But it's oddly nice to know I'm not alone.

Many great replies. Covering most of what I'd say.

Piggybacking on your reply with some "Yes, and...", because your advices are closest to my two cents.

"Advocate for yourself. I was misdiagnosed six times before they finally figured out my issue."

Same. Many times.

I advise everyone to never accept "No". Someone somewhere has the answers we need. Keep searching.

"Choose a supportive partner."

I have no idea how to do that.

"Keep a detailed diary of your symptoms and your daily activities, even when you're feeling good."

And get a fitness tracker. Self reporting is not reliable.

My most recent example: I literally felt no different on or off wellbutrin (prescribed to help me recover from a surgery). I only knew that it was kicking my ass because of my Apple Watch's activity monitoring (step counter).

Related bonus tip: I periodically stop misc scripts, just to be sure they're still actually helping me.

Great advice all around. I'll add that the fitness tracker has the added bonus of making you want to meet your "goals" on the tracker, which can sometimes be the difference between me taking a healthy walk or not.

As for choosing a supportive partner, I've found that it gets easier as I get older. Age matures people and gives them patience. I'm also lucky to have a partner who has also experienced serious health issues, so he truly understands at a deep level.

Finding him took time, probably more time than a healthy person would spend looking for a partner. But I am grateful every day that I didn't give up the search.

I've had to learn the perspective that everyone's story is different, and my arthritis is worthy of proper attention even if its 'nowhere near as big' as other conditions.

In the process of switching medications every six months for four years now, with everything working well then fading (the body can work around immuno-modifiers... grr), and my wife's determination to get me to Find A Solution... I've learned to accept that I may never have 100% relief.

Having most of my mobility and only some small bone growths at this point is my current normal, and I understand that I can't control whether it stays at this level or progresses.

(Using the word 'progresses' instead of more negative variants actually helps my frame of mind as well.)

Life is just adjusting to what is and what might be and being grateful for now.

I have a quite rare condition called intestinal malrotation which basically means my intestines didn't rotate completely before I was born (apparently they do rotate).

I had surgery and I am basically living a normal life, I didn't have symptoms until I was about 25 years old. The thing is it made me lactose intolerant and very sensitive against sleep deprivation.

What basically happens is stomach pains from time to time and that I need to visit the bathroom quite often, sometimes in a big hurry.

I'm living basically as before, eating too much lactose still and getting too little sleep. I am starting to get better on it though.

Get enough sleep is a big point in general I believe if you want to your body to be healthy. Also eat healthy and move a lot. I have a standing desk and tries to stand most of the day. It helps a lot.

I take the good days and try to make them that much better by being more productive, trying to be 'there' for my family more that day, etc.

Because I know when the bad days come (sometimes more often than good), I'm going to have to take a break and sometimes see my productivity plummet to nothing.

I am also writing a book, collecting my sarcastic thoughts on my particular illness: https://leanpub.com/you-only-have-crohns-once — I find that one outlet I have is pretty heavy (but friendly) sarcasm, when I'm stuck in a hospital, doing testing, etc., and I like to write and share in hopes someone else can have a laugh at their own situation.

Hey, got the same thing, diagnosed late 2018 at 33. So far I'm one of the lucky ones: a good biologic (Entyvio) + partial or exclusive enteral nutrition (EEN) got me to manageable. But I have a habit of trawling the scientific literature and eventually discovered https://www.gastrojournal.org/article/S0016-5085(19)39702-1/... (Tu1716 – Highly Bioavailable Curcumin (Theracurmin®) for Crohn's Disease: Randomized, Multicenter, Double-Blind, Placebo-Controlled Trial). I bought the Theracurmin product on Amazon and I feel like it was a game-changer and pushed me over the edge into deep remission, altho some foods can aggravate me.

I was lucky in that I got sick reasonably into my career, with enough resources and lack of dependents to step back and do nothing but focus on health. I believe that was key to achieving deep remission. But that type of focus doesn't necessarily lend itself to career success.

It's cliche, but you really do need to be your own advocate. "Step therapy" really does mean that you get started on old, less effective drugs first unless you fight it. And particularly in IBD, EEN is rarely used or recommended in the US relative to Europe despite good evidence https://pubmed.ncbi.nlm.nih.gov/29398336/ and clear potential as an additive effect on anyone's treatment.

PS utilized your devops tools and advice before I got Crohn's and it was critical, thanks!

I use the good days to prepare for the bad ones, if I spend my good days working out and walking, the bad days aren't as bad.

I remember to push myself on the bad days, it's too easy to avoid painful joint positions, which just makes things worse in the long run.

I've had gout for 10 years, both when I was fit, and unfit.

It's terrible to get flareups, but medication and pre-emptive tactics work. So I drank a lot of water, and just have to feel my body. Used to be my left toe at first, but then it started to spread.

I know people with severe chronic illnesses, some directly in my life. My own problems are minor by comparison, in that I can manage them to the point where they hardly affect others. Or so I think.

You need to make headspace for 'self care' as a category of activity, one you not only give yourself permission to pursue, but expect of yourself. One of the best comparisons I've heard is the oxygen mask instructions on an airplane. It's foolish to help other people when you haven't helped yourself. You just end up killing yourself by prioritizing expectations of others over your own health. If you do it right, you can often accomplish both.

I have cystic fibrosis.

I'm quick to admit my limitations with people. I own the potential lifespan issues, and view my financial plans accordingly.

I've focused on freelance, for flexibility in doing treatments, etc. I have actually been at my current role for years, but that came out of a freelance project, and it's a small company where I have a great relationship with everyone, so I have as much freedom as I need. I wouldn't trade that for a hot startup or a FAANG job.

I hire people as necessary to help me do things around the house, etc.

I'm fairly upfront with how I'm feeling and what's going on. I even did a Zoom call with a client from my hospital bed one time.

It's not just an illness when it's chronic. It is part of who you are and it helps to think of it as something that defines you uniquely and differentiates you, instead of something that is just limiting your life.

It's hard. You have to go through pain, fear and disappointment but at the same time going through all that is a testament of your strength and gives you a unique perspective around life and experience in general.

That's on a more personal perspective based on how I managed to deal with the psychological effects of something similar. The current thread has some great advice on many other aspects of dealing with it.

Depends, make sure you try everything as everyone is different. Tell yourself there is a limit, no one lives forever. Keep hopes up for a miracle cure. When you can’t do nothing about it or you did the best , cut out chunks of time to just ignore it by finding activities you really enjoy that isn’t hindered by your condition. Just zone out. Pretend everyone has your condition, how does that feel? Be grateful it isn’t another worse condition, be grateful for everything else that you can do. I’m just giving ideas

Listen to my doctor, treat my medication regime seriously and with respect, and respond to warning signs promptly. It feels completely normal to ensure I have medication with me at all times, despite the fact there's an outside chance I could die if I forget. That being said I am generally a laid-back person, which is probably why I don't fret about it.

Probably going to be braindead in my early 60s. I've had multiple chronic pain issues and I'm just turning 30. I had a lot of maladaptive coping mechanisms for pain, but I found coping mechanisms. Knowing I'm not likely to live to an old age is more motivating than disheartening, I need to get things done and live life now while I still can.

Hard to say without knowing the illnesses but for me nutrition and rest really helped. Right now I don't eat anything on Sundays and I don't do any work on that day. I also avoid eating out and stick to home cooked food using fresh meats and vegetables. This helps my body stay energized and recuperate.

Live with it. Most of the time it is worth it. Do you want to disclose what you have?

I had a super rare form of gluten intolerance that caused problems all my life. Was only picked up in my 30ies. Made a difference like day and night. I wonder what I could have achieved if it had been picked up earlier.

First of all, getting hit by chronic disease in my late 20s was not something I ever imagined. I guess nobody does. I can give some details, since it's a throw-away account: I caught a severe bacterial infection, required prolonged antibiotics treatment which caused organ damage. Catching the disease was a low-probability event, getting organ damage, too. In retrospect I realise how lucky I was that the disease was caught early on and treated. I would have been dead otherwise.

As for living with the illness. You need to find a doctor that you can work with. There will be tough times and you need someone you can trust and reach 24/7 when things go south (which they do from time to time in my case). Also, without counselling I wouldn't be here today. Your career is impacted, your family life is impacted, your sex life is impacted. I needed someone to talk to and that someone had to be outside my social circle. I had 3 sessions per week for the first months, now I go once a week. It helps.

Also, people will get upset for different reasons. Your friends, family co-workers etc. Counselling helps, but most of the time it's still hard to tolerate and accept the pain and the anger. Most of the time I'm managing their expectations, not mine.

Some people mentioned good diet, sleep, no alcohol. This is the absolute baseline. If you have serious chronic disease, you cannot afford any of these luxuries. For every mistake you make, you and someone else will have to compensate. Discipline is key.

That being said, I still have a very fulfilling life. I go on vacations, see my friends (or rather most of the time they come over and visit), have some form of a career, have a loving partner and we're planning on having children. Life is good even if it's not like I imagined it 5 years ago.

i listen to radiohead while crying in the bathroom

kidding, of course one is finding the humor in things

reminds me of that guy who said that in life even if we're forced to deal with the cards we're dealt with, bluffing is and always an option

sympathy is the last thing i'd want from the people i care about, i'd rather give them a good time as long as i can since they can cry their asses all the way once i'm gone anyways

paranoid schizophrenia here: i deal with my illness by acceptating it: it is a gift and a boon at the same time, but you must learn to leave a atom of sanity when the psychosis strikes, and give up to medical personnel. Sometimes you just launch yourself to full insanity, and after some time return even without a psychic ward or medicine, some times it breaks you for a couple of weeks.

Anyone with chronic RSI here? Mind sharing your thoughts/experiences?

Given how tech-focused HN is, I'd reckon RSIs to be quite common.

I'm "lucky" to have experienced chronic back pain for close to 10 years. Started a couple of years after graduation and got to a point where I couldn't sit for more than 20min or sleep for longer than 3 hours. It affected everything from my relationships, to my job (which I had to quit), to my mental state. I say "lucky" because I have mostly gotten over it recently, both physically and emotionally. So I can reflect on my time before pain, my time in constant pain and my time now.

Your response to chronic disease depends on your personality. Being stoic by nature, with strong background in sports I refused to accept I was disabled. I would not decline friends invites to play sports, even though I had to take a bunch of advil to last an hour of soccer. I wouldn't slow down on air travel, even though I spent half the flight in the bathroom where I could take a pose with less back pain. I had no empathy for myself and was refusing my condition. I regret that period and think it actually made me and my condition worse.

At about year 7, I started to accept my new, limited by back pain, self. I told my friends that I have the condition. It allowed me to vent periodically. Or make odd requests like asking to sit on side seat at a brunch table, so I can take frequent walks. I reorganized our house to be more forgiving for a back pain sufferer (basically moved everything I ever needed from the floor to waist level, so I didn't have to bend). Started taking days off work just to rest. Told my coworkers that I needed to adjust schedule because of the "back pain thing". I allowed myself to talk about it, vent about it and complain about I had a particularly bad day.

In the following years I was in more pain than before, but I actually felt better. I felt like I was accomplishing things I wanted and that my situation was just different, not hopeless. It no longer felt like I was disabled, but rather that I had a "thing". Everyone has their own: someone is taller, someone's brother beat them up, someone has a limp from a car accident, others grew up in poverty. It doesn't make them better or worse, it makes them who they are. My thing was that I had back pain. And it required me to make behavior changes to live a fulfilling life.

My advice is to evaluate your feelings to your condition and to yourself with the condition. Have you accepted it? Do you accept the new normal for yourself? Are your ok that some behaviors and experiences are out of reach? If the answer is "no" to any of these, finding peace with your new self should be the focus. It's not going to happen overnight, but it also won't happen without reminders and deliberate work.

When you have accepted the new normal, your happiness tank would start to refill with new experiences. The road ahead would not be easy by any means, but you would have the strength to walk it.

As others have said, you just sort of live with it and it more or less becomes routine/normal.

At 19, I was diagnosed with Barrett's Esophagus, which is when you've had heartburn so much that the lining of your esophagus starts to mutate as a protective measure and develops cells similar to the lining of your stomach. The cell mutations make you predisposed to developing esophageal cancer, so I have to get it biopsied every year or two to keep an eye on it. Rarely fatal, but also usually diagnosed after the age of 50, when there are other age-related issues that are more likely to get you first. And you basically have to take a super high dose of heartburn medication forever (which doesn't fix it, but prevents it from getting worse), which causes it's own issues.

A few years after that, central sleep apnea[2]. Which is a neurological form of sleep apnea, where your brain just randomly decides to stop telling your body to breath. It's not due to physical obstructions like obstructive sleep apnea, so very little you can do to improve things.

Also in the interim, I was diagnosed with a urethral stricture[3]. Which is where scar tissue in your urethra cause a blockage and prevent you from being able to urinate. Scar tissue never really stops growing, so periodically I have to have a surgery to remove the scar tissue that's built up, wear a catheter for a few weeks for new scar tissue to grow, and then wait until it gets bad enough to necessitate another surgery.

All three of them are chronic, albeit not terminal. Although the first one makes you pre-disposed to esophageal cancer, which doesn't exactly have the best survival rate. Dwelling on any of it can be overwhelming, so eventually I just stopped doing that. It is what it is, all you can do is accept it and move on. From a practical standpoint, it just means:

- Substantial budgeting for healthcare. Although I can time it to an extent to optimize things, I'm looking at a minimum of $10-15k every three year cycle in recurring costs even while everything is relatively stable.

- All three of the above were discovered incidentally, rather than deliberately. Two of which happened to be followups to specialists after (unrelated) visits to the ER, and one due to a sleep study I did myself.

- I no longer trust PCPs, due to the above. I had voiced concerns/issues around symptoms for all of the above over many years, and my PCPs had never taken them seriously enough to truly look into the root causes of any of my concerns. I also have a form of eczema that presented atypically, which my PCP basically ignored for ~3 years before I insisted on seeing a dermatologist. Dermatologist couldn't actually tell what it was, but was wayyy more concerned when seeing it as it presented similarly to skin cancer. Turned out to not be, but took a biopsy to confirm. The fact that two different PCPs never felt the same level of concern was mildly irritating and frustrating after the fact. So I'm now far more likely to actively participate in my doctor visits, taking what they say under advisement but following up with my own research and being more insistent on diagnostic tests and referrals. I'm sure my doctors see me as a hypochondriac, but I'd rather have excessive diagnostics and potentially annoy my PCP rather than be surprised by another unlikely but easily tested for issue.

At the end of the day though, it is what it is and I can't do anything about it. And the only real way to manage the stress is to pragmatically accept that and not dwell any more than you have to on it. If anything progresses and gets worse I'll deal with that when it comes, and otherwise I'm not going to let the specter of those possibilities put a damper on things before that.

[1] https://www.mayoclinic.org/diseases-conditions/barretts-esop...

[2] https://www.mayoclinic.org/diseases-conditions/central-sleep...

[3] https://www.urologyhealth.org/urologic-conditions/urethral-s...

Have you looked into surgery for the reflux? I had something called "transoral incisionless fundoplication (TIF)" several years ago. It seemed to reduce some of my symptoms somewhat at first, but mostly regressed after several months, and never actually stopped my nighttime breathing problems/throat closing up.

So I have been thinking I should try this thing called LINX. But I am really not sure if that one is better than a partial Nissen fundoplication of some sort. Interested to hear your opinion on it.

I did initially, but haven't explored it in a while. One of the fun aspects of Barrett's is that, in order to develop it, the issue has to have been present and untreated for quite a while. And the erosive effects by that point are too severe and act as a contraindication for most surgical procedures, including LINX it appears[1]. I also have a hiatal hernia which acts as another contraindication to most surgical therapies.

I hadn't heard of the LINX procedure yet and will definitely bring it up at my next GI visit. But the general consensus I've gotten from all of my GIs over the years is that surgical interventions for Barrett's is a door that can't be shut, and once you start you'll likely require progressively more invasive procedures over time rather than a one-and-done surgery. And that it's best to manage it with PPIs for as long as possible before opening that door (and the potential complications that come along with the surgeries).

[1] https://www.sages.org/wiki/linx-reflux-management-system/

Right, surgery is no joke. That is why I initially tried the TIF thing because it was minimally invasive laparoscopic including repair of a small hernia and I was out the next day. But it didn't stick, and didn't work for my breathing issues.

But I have been very hesitant to try another different surgery because it has risks. Just some days when I wake up and my throat is closed up and I am tired etc. I second-guess that. For me Nexium and Omeprazole handle almost all of the actual heartburn. It's just the throat closing up and breathing issues especially when I lay down and sometimes more significant fatigue after meals that don't really go away.

While I've had similar issues, I never particularly attributed them to the GERD stuff directly. Most of those symptoms ended up getting indirectly treated while addressing other issues.

Feel free to reach out if you want to talk further (email is in profile). There are a few things I'd recommend that may potentially help, but starts to get a bit too specific for getting into here.

Simple things to focus on without needing outside help with: sleep, diet, exercise, and a means to reflect.

More advanced / things that might require help: blood work, therapy, medication.

Sleep: Many chronic conditions are exacerbated by lack of sleep. There's been a general push for better quality sleep lately, but I still feel like we're not placing enough importance on sleep. Without good sleep, your diet and exercise won't be anywhere near as effective. Some easy wins: blackout shades, white noise machine, avoid blue light in the evening, and find a consistent bed / wake time.

Diet: Your mental and physical well being is a rolling average of the things you eat. Cheat days are fine; cheat weeks are not. A lot of chronic conditions come from inflammation, which can largely be improved by eating smaller meals with more colors in them (for most people). We’re only just discovering how important a healthy microbiome is for both physical and mental health. Eat more things that have or had roots. Eat less red meat. Find a good probiotic. HYDRATE. Most people don’t drink nearly enough water—so many issues disappear when you get enough water. Easy wins: use spices, avoid fried food, consider intermittent fasting (good for inflammation) if your doctor is okay with it.

Exercise: I hardly do it for physical reasons (though they are very positive), but instead for chemical reasons. Exercise is very important for your brain, and to flush toxins. I play soccer and lift weights, but you might find something else that you enjoy. Getting your body moving can make a very big difference with chronic conditions. Get the lungs and blood pumping. Easy wins: go for a walk after eating, do 10 pushups + squats + situps after a Zoom call or when you finish a task.

Reflect: Whether you do a 5-minute journal, transcendental meditation, 'Getting Thing Done', or whatever system is popular today... give yourself time to zero out your “stress box” the same way people zero out their email inbox. I personally enjoy using an infrared sauna several times a week—30-45min of uninterrupted time to let my thoughts go. An adrenal system that is constantly bombarded by stress causes so many of the chronic diseases that people suffer from (such as my own thyroid). The more you learn to de-stress, the better you become at detecting when you feel mentally or physically stressed. It takes time. Easy wins: schedule time to unwind on a consistent basis, learn some simple breathing techniques (here is a good one: https://www.youtube.com/watch?v=6FyE3VOWJI0 ), find a ritual you enjoy.

Bloodwork, therapy, medication: it helps to have a few thorough blood panels done so you can get a good idea about where your body needs some assistance. Chronic illness doesn’t always manifest itself the same way in everyone. If you can afford it, find a doctor who charges per unit of time and not per visit; they will be better able to properly listen to your problems and work towards fixing the cause of the problem rather than just the symptoms. Just as a chronic illness doesn’t mean you’re broken, medication also won’t fix you. It takes time to figure things out and adjust your lifestyle.

Chronic illness can be very stressful, and sometimes people might tell you there’s nothing wrong with you even though you have the deep sensation that something is. Consider seeing a therapist. Doesn’t necessarily need to be for psychological reasons. I personally visit a physical therapist 2-3 times a month as a way to better understand how my body is feeling and where I can make improvements over time. Being receptive to help is a big first step for many people.

I have Crohn's disease. First symptoms 5 years ago, just before I was about to enter my final year of uni. For the first 3 months I was pretty much bed/bathroom bound, lost so much weight and looked so weak that a few friends / family at first thought I had cancer. Next 6 months after I took off uni, drugs were only semi effective and side effects meant I couldn't do any thinking without getting a headache (i.e. I could watch a movie, but I couldn't play video games). Things then got gradually better up until now where normally I don't notice it, but it does flare up occasionally (every 6 months or so).

What I do:

1. Identify what triggers it.

Doctors don't know what to tell me apart from "take these pills / shots" as it is unique to every individual. However from trial and error I have found these key triggers: lack of sleep, lack of exercise, certain food choices, excessive alcohol, stress. Small slip ups on any off these are fine, but continual abuse over periods of days / weeks and it will flare up again. Nearly every flareup since I worked these things out can be traced back to a change in life patterns. Moving house, going on holidays, start of Covid (and closure of the gyms) etc. I've worked out the triggers and now I need to address them, which is easier said than done over a timespan of years.

Note for anyone who has a friend / family member with it: Initially, I tried everything under the sun with a possibility of working, and the only thing to fix things up were the drugs. Now I can manage drug free, but all those methods did sweet F-all until it was controlled with drugs (but every case is different). Send them a link to whatever method you want, and then never bring it up again. It shocked me how many people who thought they were doctors came out of the woodworks offering me crackpot theories and then were offended when either I didn't do it or it didn't work (oh you weren't strict enough, you didn't give it long enough). For everyone's sake, provide the information then shut up.

2. Address the triggers.

Food: Avoid overconsumption of dairy, wheat, sugar, alcohol (wine / beer are a lot worse than spirits, white spirits are the go to although I don't like them). A bit here and there is fine and in a normal week I'll have all of them, but it is when you are chaining days of them and they dominate your diet it becomes bad. Also avoid overeating in one sitting, as putting your stomach at max capacity seems to also be a trigger.

Sleep is obvious. Min of 8 hours, 8.5-9 daily is best

Exercise frequently, at least 3x a week. Cardio is ok, but it seems weight training helps the most. Of the list I feel this is the most infrequently mentioned by others, but has helped me a ton.

Stress: I deliberately took a job with a company that had a reputation of respecting work life balance. It is still a demanding environment, but you can choose how hard to push yourself. I try to keep to an 8 hour day but maximise how much I do in that time, and completely switch off after. I turned down a FAANG offer to work here, assuming I would be trading career / financial success for lower stress, but it has turned out better on all fronts (career, pay, stress) which was a nice bonus.

3. Plan ahead

Although I have it under control, I definitely feel like I have a lot less energy than my friends. I just feel my body using my energy reserves to constantly fight this thing and it is fatiguing, and is getting slightly worse every year. I don't want to be working when I'm 60, and have no idea if disaster will strike earlier.

Financially I'm focused on getting to a point where I can retire in around 10 years time, FIRE style. I love my work and plan to keep doing it whilst I still love it, but I need that backup plan covered. Previously I have had to take long periods off to rest up and heal, and during that time I did nothing remotely work related, didn't write a single line of code. I need to be prepared for that happening again.

Plan B is company stock options paying off which is looking more probably than not in ~4 years or so, and would make retirement more comfortable, but I'm not banking on a plan B.

4. Give up control

Control everything you can, and be indifferent to everything you can't. I wasted so much energy early on being angry about how things were, rather than using that energy to fix what I could. Easier said than done however.

5. (Bonus point) Get off the internet

Back when I was diagnosed I found various different groups online that I thought would be good to get some answers and see what other peoples experiences are like. Bad move. They are like news channels, reporting mainly the bad side of the experiences. Don't let your disease consume your life, let alone other people's experience of it.

That's all the advice I have. Bit late in the thread to be commenting, but hopefully a braindump will help someone.

magnesium

My SO has a chronic pain disorder. So, I'll try to relate my experiences as the SO of person with a chronic illness. The exact cause is known, but there really isn't much to be done about it. I'll skip the specifics of the disease, but suffice to say, it is on the cusp of being classified as a 'suicide disease'.

For my SO, it's a day-to-day thing. Sometimes it goes down to minute-to-minute. But there is always another minute and another day with less pain. Keeping focused on the good days seems to help my SO.

Spirituality and religion have had mixed success. Spirituality has helped more than religion, so to speak. Organized religion may be good for some, but we have not had luck in finding a community that helps my SO. Church folks kinda get gossipy and start expecting things of my SO that my SO can't provide during painful times.

Love and support from friends and family have been essential to my SO. Limiting contact with family that is non-supportive has been good. Surprisingly, covid-time has been a boon on this front. Find people that actually support you and be quick to limit contact with unsupportive people.

Staying up to date on the latest medical new has been mixed. One can obsess over the newest studies. So we try to look into it about once avery 2-3 months for anything new.

Support groups have mostly been a wash. Online groups tend to be mostly people that are new to the disease. Over time they come to accept the diagnosis and the restrictions on life that come with the disease. But it can be tiring trying to help people still in denial. They also tended to become ... well ... suicide pacts, at least with my SO's disease. Keeping a good eye on your media consumption is essential.

Real Life support groups are hard to find as my SO's disease is pretty rare. We've gone to support groups for related diseases and those did help my SO. But as they were for a related disease and not my SO's, they were of limited utility outside of human connection.

Life expectations have been readjusted. It's not an easy process, and you need to give it the proper time to grieve. The grieving process takes as long as it takes, but you must take it. Finding new goals and dreams in your life is an important part of this. These goals must be meaningful and achievable to you for them to be effective. It's really hard to meet both criteria if you've not finished mourning your past conception of your life.

I'd be happy to answer any other questions as well. Good idea on reaching out and trying to get some help. I know that is a tough step to take. Your courage to do so is inspiring!

In general, my SO takes every day as it comes and we have to accept the realities of our lives as they are. It's not easy, but it's a lot easier with friends and family.

The work by byron Katie

Switch to elimination diet to see if it changes anything (eg. Oxolate-free diets seem to help in quite a few illnesses)

While this is good general advice in my case "toughing it out" actually causes more damage to my joints and makes my condition worse. I learned this early on when downplaying my pain during doctor visits. In my case (rheumatoid arthritis) pain=joint damage. I exercise daily, but have to keep a close eye on my joints to make sure I don't push them too hard. While my "mind" wants to bike/run 10 miles, my joints cannot take the punishment, and no amount to "toughing it out" will make it better.

This is the key statement:

> Find the constraints that allow you to do what you want to do without aggravating your body too much

I can tell you from experience I don’t have joints in certain parts of my body. You have no choice but to tough it out given no choice.

Have you dealt with a serious chronic health issue? It's a lot easier to say these things than to actually do them.

For example, it's a lot harder than it sounds to find the constraints between aggravating your body / causing additional problems, and doing what you want to do. I still struggle with it, five years after my first hospital stay

I interpreted the parent comment as... it's gonna hurt no matter what you do, so you may as well do what you wanna do while managing your condition as needed.

What you have said is a logical response to the problem.

But, unfortunately, when you are in that situation (I was), you are under a lot of pressure and making logical decisions is extremely difficult (I couldn't).

I get a lot of advice from 20-year olds whose worst brush with illness or injury was a case of the flu, that's why I asked.

This is advice that may work for you but may be dangerous for others. My girlfriend used to have chronic pain and toughing it out simply want an option. It just made things worse.

Your comment about finding the constraints of the body that don’t aggravate things too much is good though.