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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?

#21

Post by 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.

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

#22

Post by jcadam »

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.

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

#23

Post by 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.

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

#24

Post by runawaybottle »

monoideism wrote: post #7
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…

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 have, that advice is not from lack of experience.

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

#25

Post by heavyset_go »

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 about your health if you don't want to disclose specifics.

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

#26

Post by josefresco »

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 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

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

#27

Post by toshk »

thehobgoblin wrote: post #3

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…

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

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

#28

Post by monoideism »

runawaybottle wrote: post #24
monoideism wrote: post #7

Earlier quoted context omitted.

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 have, that advice is not from lack of experience.

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.

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

#29

Post by injidup »

wpasc wrote: post #18

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 ( I live with pain in my joints ever…

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

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