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 following:

--Like another poster mentioned, pay attention to the little things. Sleep, exercise, diet, stress levels. Treat your body like a spoiled little princess, and it'll be less likely to throw a fit.

--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.

--Educate the people around you. The stigma of chronic illness is generally less than the stigma of "that person who you can sometimes depend on, but then randomly blows deadlines, and appears to be hungover all the time."

If you're in a safe environment, talk to your boss. Talk to your coworkers. Tell them what's up, don't leave them guessing, because they're not going to guess something you like.

If you're not in a safe environment, GTFO as soon as possible, salary be damned.

--Educate yourself as well. Not knowing is the most stressful thing, and you can mitigate a lot of that stress by developing more knowledge of your disease. Try to avoid anecdotal evidence (random forum posts, ect), and stick to respected journals and textbooks.

--Advocate for yourself. I was misdiagnosed six times before they finally figured out my issue. If I hadn't demanded further testing, I would most likely be dead at the moment. (This is another area where educating yourself really pays off.)

--Choose a supportive partner. If they treat you like a hypochondriac, or aren't sympathetic to your issues, then get out.

(On a similar note, don't believe anyone who says chronic illness kills any hope of relationships. I have a fantastic partner, and have many chronically ill friends who do as well.)

--Keep a detailed diary of your symptoms and your daily activities, even when you're feeling good. This will help you figure out what helps, what doesn't, and what your tolerance levels are for activities, exercise, medications, ect.

--Stay on top of medical developments related to your disease, and reach out to any trials that may benefit you.

I could add a hundred other things to this list, but I think those are the important ones.

So yeah. Keep fighting the good fight. Again, and again, and again, and again.

(Edit: Took out some identifying info.)