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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?

#81
post #17

Don't have a chronic condition (as far as I know) but have a child with a minor autoimmune issue. Having someone you care about affected provides a somewhat interesting "sideline" perspective on the best course of action. Here is what I did: 1. Try to learn what the world knows. I've read 2 books and close to 100 scientific papers ranging from 1980 up to 2020 about the condition. This helps placing the incident as a…

I love #1.

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

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

It opens up #2 and #3 as well.

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

#82
I'm "lucky" to have experienced chronic back pain for close to 10 years. Started a couple of years after graduation and got to a point where I couldn't sit for more than 20min or sleep for longer than 3 hours. It affected everything from my relationships, to my job (which I had to quit), to my mental state. I say "lucky" because I have mostly gotten over it recently, both physically and emotionally. So I can reflect on my time before pain, my time in constant pain and my time now.

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

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

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

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

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

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

#84
post #29
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 pre…

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

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

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

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

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

#85
post #60

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 fo…

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

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

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

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

#86

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…

> This is going to be blunt and a little depressing.

Then keep it to yourself and don't infect others with your defeatism.

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

#87

Earlier quoted context omitted.

> 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…

In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics. If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they w…

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

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

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

#88
Hard to say without knowing the illnesses but for me nutrition and rest really helped. Right now I don't eat anything on Sundays and I don't do any work on that day. I also avoid eating out and stick to home cooked food using fresh meats and vegetables. This helps my body stay energized and recuperate.

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

#89
post #75

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". Eve…

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

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

#90

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…

https://youtu.be/0iLD9uAdq4M
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