Ask HN: How do you deal with chronic illness?

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.

I've been dealing with a minor, but frustrating condition for the past few months. I don't know yet if it's chronic, but it very well may be.

Some of my thoughts have already been shared by others, but I try not to push myself as much as I used to do. I still try to do things I enjoyed before such as light exercise, taking long walks, and hanging out with friends (carefully, obviously, because of COVID). I might not go for a long bike ride, it doesn't mean I can't stay active without stressing my body beyond what would cause symptoms to flare.

The more I can keep my mind of symptoms by working, spending time with family and friends, and moving around, the less depressed I am.

I also try to educate myself on my condition/symptoms. I try not to diagnose myself or come to solid conclusions. However, I feel like having a greater knowledge of anatomy and physiology with regard to my situation aids in asking appropriate questions to my physicians and understanding their feedback.

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.

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.

As others have said, you just sort of live with it and it more or less becomes routine/normal.

At 19, I was diagnosed with Barrett's Esophagus, which is when you've had heartburn so much that the lining of your esophagus starts to mutate as a protective measure and develops cells similar to the lining of your stomach. The cell mutations make you predisposed to developing esophageal cancer, so I have to get it biopsied every year or two to keep an eye on it. Rarely fatal, but also usually diagnosed after the age of 50, when there are other age-related issues that are more likely to get you first. And you basically have to take a super high dose of heartburn medication forever (which doesn't fix it, but prevents it from getting worse), which causes it's own issues.

A few years after that, central sleep apnea[2]. Which is a neurological form of sleep apnea, where your brain just randomly decides to stop telling your body to breath. It's not due to physical obstructions like obstructive sleep apnea, so very little you can do to improve things.

Also in the interim, I was diagnosed with a urethral stricture[3]. Which is where scar tissue in your urethra cause a blockage and prevent you from being able to urinate. Scar tissue never really stops growing, so periodically I have to have a surgery to remove the scar tissue that's built up, wear a catheter for a few weeks for new scar tissue to grow, and then wait until it gets bad enough to necessitate another surgery.

All three of them are chronic, albeit not terminal. Although the first one makes you pre-disposed to esophageal cancer, which doesn't exactly have the best survival rate. Dwelling on any of it can be overwhelming, so eventually I just stopped doing that. It is what it is, all you can do is accept it and move on. From a practical standpoint, it just means:

- Substantial budgeting for healthcare. Although I can time it to an extent to optimize things, I'm looking at a minimum of $10-15k every three year cycle in recurring costs even while everything is relatively stable.

- All three of the above were discovered incidentally, rather than deliberately. Two of which happened to be followups to specialists after (unrelated) visits to the ER, and one due to a sleep study I did myself.

- I no longer trust PCPs, due to the above. I had voiced concerns/issues around symptoms for all of the above over many years, and my PCPs had never taken them seriously enough to truly look into the root causes of any of my concerns. I also have a form of eczema that presented atypically, which my PCP basically ignored for ~3 years before I insisted on seeing a dermatologist. Dermatologist couldn't actually tell what it was, but was wayyy more concerned when seeing it as it presented similarly to skin cancer. Turned out to not be, but took a biopsy to confirm. The fact that two different PCPs never felt the same level of concern was mildly irritating and frustrating after the fact. So I'm now far more likely to actively participate in my doctor visits, taking what they say under advisement but following up with my own research and being more insistent on diagnostic tests and referrals. I'm sure my doctors see me as a hypochondriac, but I'd rather have excessive diagnostics and potentially annoy my PCP rather than be surprised by another unlikely but easily tested for issue.

At the end of the day though, it is what it is and I can't do anything about it. And the only real way to manage the stress is to pragmatically accept that and not dwell any more than you have to on it. If anything progresses and gets worse I'll deal with that when it comes, and otherwise I'm not going to let the specter of those possibilities put a damper on things before that.

[1] https://www.mayoclinic.org/diseases-conditions/barretts-esop...

[2] https://www.mayoclinic.org/diseases-conditions/central-sleep...

[3] https://www.urologyhealth.org/urologic-conditions/urethral-s...