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Ask HN: How do you deal with chronic illness?

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111–120 of 187 posts

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

#111
The biggest challenge is giving yourself permission to not be 100%. Ableism applies to yourself too. Non-visible disabilities are insidious with the amount of mental trash you will tell yourself. i.e. "Well I should be able to do X."

If yesterday you were able to wipe your own ass, but today you can't; That's what it means today. Don't dwell on the past, remind yourself of what you still can do today.

Be gentle with yourself.

I guarantee that you are beating yourself up worse then other people are.

Also, this is when your domestic support network matter the most. You are at your most vulnerable.

And one more thing, Chronic Illnesses bring all their friends. If you have one now, you will have more later. Especially if it's an auto-immune disease.

Do you own research, and be informed when you goto the doctor.

Re-evaluate your expectations as often as you need to. Remind yourself, you are not alone. Find solace with others that share your similar conditions. Be kind to yourself. Be gentle with yourself.

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

#112
post #106

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"…

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

Unlike, say, your circulatory system or digestive system, your immune system is not a separate set of distinct and readily identifiable organs with a specific and isolated function of "immunity." Your skin is part of your so-called immune system. Your gut is part of your so-called immune system. Your respiratory tract is part of your so-called immune system.

Figuring out that the system as a whole is generally designed to keep out invaders and there is no separate distinct "immune system" was enormously helpful to me in understanding how to effectively cope with a compromised immune system due to a genetic disorder, so my underlying condition cannot be fixed. But there is a lot I can do to shore up the functioning of my impaired body with the right mental models.

See also:

https://news.ycombinator.com/item?id=24033181

https://news.ycombinator.com/item?id=24015957

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

#113

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…

Someone else mentioned in the comments that you must learn to push through and ignore your illness. That is true but comes with warnings. 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…

Nice comment, but one nit: I think awareness + acceptance + gratitude is a better path than ignoring an illness. I say this as someone that has a lot of deeply ingrained avoidance behaviors (e.g. smoking weed 24/7 to mask anxiety and pain, isolating myself to avoid social anxiety). Obviously, ignoring problems can often make them worse, and sometimes simple solutions do exist (e.g. I have had disabling IBS off and on for 20+ years that is improved significantly by avoiding alcohol and taking fiber). That said, everyone needs relief at times, so be kind to yourself about avoidance patterns.

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 —> —> ), it’s like C: (feel pain —> “this is a sensation I’m experiencing” —> ). 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.

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

#114
I use the good days to prepare for the bad ones, if I spend my good days working out and walking, the bad days aren't as bad.

I remember to push myself on the bad days, it's too easy to avoid painful joint positions, which just makes things worse in the long run.

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

#115

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 fol…

Ugh. I'm sorry for your circumstances. Sorry to everyone, really. But it's oddly nice to know I'm not alone.

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.

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

#116
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?

After trying lots of other things, we finally got tested for mycotoxins, a mold byproduct, and after that test we started testing our house and discovered mold there. Neil Nathan's book "Toxic" was super-helpful in teasing out the many confusing and overlapping symptoms associated with many chronic illnesses.

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

#117

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…

> ~300 surgeries

Oh my god, I can't even imagine.

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

#118
post #39

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 t…

How does one actually go about that process of reversing damage to your arteries?

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

#119
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…

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

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

#120
Simple things to focus on without needing outside help with: sleep, diet, exercise, and a means to reflect.

More advanced / things that might require help: blood work, therapy, medication.

Sleep: Many chronic conditions are exacerbated by lack of sleep. There's been a general push for better quality sleep lately, but I still feel like we're not placing enough importance on sleep. Without good sleep, your diet and exercise won't be anywhere near as effective. Some easy wins: blackout shades, white noise machine, avoid blue light in the evening, and find a consistent bed / wake time.

Diet: Your mental and physical well being is a rolling average of the things you eat. Cheat days are fine; cheat weeks are not. A lot of chronic conditions come from inflammation, which can largely be improved by eating smaller meals with more colors in them (for most people). We’re only just discovering how important a healthy microbiome is for both physical and mental health. Eat more things that have or had roots. Eat less red meat. Find a good probiotic. HYDRATE. Most people don’t drink nearly enough water—so many issues disappear when you get enough water. Easy wins: use spices, avoid fried food, consider intermittent fasting (good for inflammation) if your doctor is okay with it.

Exercise: I hardly do it for physical reasons (though they are very positive), but instead for chemical reasons. Exercise is very important for your brain, and to flush toxins. I play soccer and lift weights, but you might find something else that you enjoy. Getting your body moving can make a very big difference with chronic conditions. Get the lungs and blood pumping. Easy wins: go for a walk after eating, do 10 pushups + squats + situps after a Zoom call or when you finish a task.

Reflect: Whether you do a 5-minute journal, transcendental meditation, 'Getting Thing Done', or whatever system is popular today... give yourself time to zero out your “stress box” the same way people zero out their email inbox. I personally enjoy using an infrared sauna several times a week—30-45min of uninterrupted time to let my thoughts go. An adrenal system that is constantly bombarded by stress causes so many of the chronic diseases that people suffer from (such as my own thyroid). The more you learn to de-stress, the better you become at detecting when you feel mentally or physically stressed. It takes time. Easy wins: schedule time to unwind on a consistent basis, learn some simple breathing techniques (here is a good one: https://www.youtube.com/watch?v=6FyE3VOWJI0 ), find a ritual you enjoy.

Bloodwork, therapy, medication: it helps to have a few thorough blood panels done so you can get a good idea about where your body needs some assistance. Chronic illness doesn’t always manifest itself the same way in everyone. If you can afford it, find a doctor who charges per unit of time and not per visit; they will be better able to properly listen to your problems and work towards fixing the cause of the problem rather than just the symptoms. Just as a chronic illness doesn’t mean you’re broken, medication also won’t fix you. It takes time to figure things out and adjust your lifestyle.

Chronic illness can be very stressful, and sometimes people might tell you there’s nothing wrong with you even though you have the deep sensation that something is. Consider seeing a therapist. Doesn’t necessarily need to be for psychological reasons. I personally visit a physical therapist 2-3 times a month as a way to better understand how my body is feeling and where I can make improvements over time. Being receptive to help is a big first step for many people.

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