Ask HN: How do you deal with chronic illness?

My wife has ME/CFS. Once it started to become unbearable for her I decided that we'd rely on just my income and she would stay home. Certainly she'd prefer to work as well, and staying home is still not entirely restful for her, however it's better than her pushing her body through hell.

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 for me personally. Hope once I am on insulin - I can still lead reasonable decent life past 80. Not sure if I know anyone who had diabetes in their 30s and lived past 80s with reasonably good health. :-)

I know people with severe chronic illnesses, some directly in my life. My own problems are minor by comparison, in that I can manage them to the point where they hardly affect others. Or so I think.

You need to make headspace for 'self care' as a category of activity, one you not only give yourself permission to pursue, but expect of yourself. One of the best comparisons I've heard is the oxygen mask instructions on an airplane. It's foolish to help other people when you haven't helped yourself. You just end up killing yourself by prioritizing expectations of others over your own health. If you do it right, you can often accomplish both.

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 won't do it with it or they'll hold it against you. My manager at Intuit just said "no" to every single request my doctor had written down. HR's response was to just shrug their shoulders and say they have no authority. The next company just laid me off for having too many doctor's appointments.

The best thing you can do to improve your work-life with a chronic illness/disability is to find a great manager. The company that laided me off only did it after my manager changed away from the person I actually interviewed with. Remote work is generally easier to keep your illness from being noticeable to as many people.

And while it is illegal for your workplace to do all sorts of things, they will still do it. Suing a current/former employer is a nuclear option that will likely hurt you far more than it could ever help you. They can always get retribution every time a future employer calls to confirm previous employment.

It's been 5 years now, and I still feel guilty about not suing Intuit over my entire experience there. Not because I needed the attention, money, drama, etc. Just because I know they continued doing it to more people like me after I left.

As a more practical matter, I've found it really important to be smart about when I change/add/remove my prescriptions. If you take enough drugs, there will be bad side-effects, and you don't want to have it happen on the day of your annual review (speaking from experience), big presentation, etc.

> --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.

Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bitterness subsides into a dull background noise.

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I'm epileptic. I don't deal with it well at all. I hate it and it annoys the hell out of me. There is the giant, "what if" fear that overshadows pretty much everything I do, including going to sleep. Fortunately, I have a good pulse on how I'm feeling (i.e. if I'm going to have a seizure in the next few days), and I know what I need to adjust in order to keep the seizures mostly at bay.

Apart from medication, the most important thing to keep in check is diet. I've found intermittent fasting and low-carb/gi help the most, it's annoying to keep up, but if I fast in the morning (aka skip breakfast, or keep my a.m. meals keto), then I can generally coast and not have to worry about seizures too much, but if I eat a moderate amount of higher-gi carbs, then I will likely have a period of a few days where I have partial seizures.