Ask HN: How do you deal with chronic illness?
I've been reading about people who have chronic conditions, some of which can be quite challenging. I'm currently going through something relatively minor myself.
But it got me wondering, for those living with a chronic illness (not necessarily terminal), how do you deal with the stress of it?
186 comments
[ 3.3 ms ] story [ 211 ms ] threadwe 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 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.
And I wish you well.
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.
This is advice for people that make it out of their critical treatment phase and now must manage the rest of their life with the aftermath.
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
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).
This is the key statement:
> Find the constraints that allow you to do what you want to do without aggravating your body too much
Your comment about finding the constraints of the body that don’t aggravate things too much is good though.
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.
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.
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.
1: https://en.wikipedia.org/wiki/Spoon_theory
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.
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.
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 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.
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.
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.
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.
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.
I'd be careful of this approach if there is something like a company rule that all accommodations must go through HR.
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.
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.
I've learned not to listen to people that say that I can't or it won't.
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.
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.
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 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.
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.
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.
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.
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 :)
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
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.
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.
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.
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.
Then keep it to yourself and don't infect others with your defeatism.
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'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.)
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.
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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.
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 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!
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!
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.
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.
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.
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.
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...
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
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.
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!!
Other likely reasons would be caffiene/sugar spikes.
What is your general state of health and diet like, and stress levels?
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...
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.
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.
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.
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.
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 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.
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.