Ask HN: How do you deal with chronic illness?

[DantesKite]

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?

[Karawebnetwork]

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.

[at_a_remove]

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.

[devteambravo]

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.

[specialist]

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.

[notamy]

> ~300 surgeries

Oh my god, I can't even imagine.

[lma21]

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

[shrimp_emoji]

https://youtu.be/0iLD9uAdq4M

[notslow]

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.

[elric]

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.

[shock]

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

[tashmahalic]

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

[heavyset_go]

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.

[KKPMW]

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

[thehobgoblin]

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.

[csunbird]

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.

[toshk]

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

[DantesKite]

Thanks for the perspective. I appreciate it.

And I wish you well.

[josefresco]

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.

[mmvs]

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.

[syncbehind]

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.

[hpagey]

Can I contact you ? If so how?

[wpasc]

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 :)

[injidup]

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

[mikelevins]

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.

[neltnerb]

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.

[neurouch]

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.

[blamestross]

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. [email protected]

[s5300]

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...

[mosseater]

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!!

[throw982739182]

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.

[thorin]

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?

[thewebcount]

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.

[DoreenMichele]

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.

[unwind]

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

[TheOperator]

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.

[taway7878]

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.

[jcadam]

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.

[electriclove]

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

[kup0]

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

[emptysongglass]

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.

[h2odragon]

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.

[nforest]

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.

[49yearsold]

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. :-)

[Ingosla]

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.

[juskrey]

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

[cpwright]

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.

[guybedo]

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

[sjg007]

For your situation, is there a diet and exercise solution if you could do it?

[flybrand]

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.

[zadkey]

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.