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Ask HN: How do you deal with chronic illness?

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Re: Ask HN: How do you deal with chronic illness?

#31

Post by 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.

Re: Ask HN: How do you deal with chronic illness?

#32

Post by paperwasp42 »

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.)

Re: Ask HN: How do you deal with chronic illness?

#33

Post by runawaybottle »

josefresco wrote: post #26
runawaybottle wrote: post #5

You can’t let it dictate anything. If it hurts to go to the gym, still go. Find the constraints that allow you to do what you want to do without aggravating your body too much, and build some pain tolerance. Psychological tolerance is a must as well, but you almost have no choice but to develop that unless you literally want to never progress. This is advice for people that make it out of their critical treatment pha…

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…

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.

Re: Ask HN: How do you deal with chronic illness?

#34

Post by spaceisballer »

heavyset_go wrote: post #25
Karawebnetwork wrote: post #9

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 st…

> 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 a…

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.

Re: Ask HN: How do you deal with chronic illness?

#35

Post by 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.

Re: Ask HN: How do you deal with chronic illness?

#36

Post by salex89 »

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...

Re: Ask HN: How do you deal with chronic illness?

#37

Post by 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.

Re: Ask HN: How do you deal with chronic illness?

#38

Post by heavyset_go »

jcadam wrote: post #22
taway7878 wrote: post #13

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.

Re: Ask HN: How do you deal with chronic illness?

#39

Post by Bender »

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.

Re: Ask HN: How do you deal with chronic illness?

#40

Post by rohfle »

Karawebnetwork wrote: post #9

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 st…

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.

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