Something many people don’t realize about chronic illness and/or disability is that it’s a full time job in and of itself. There is so much EFFORT you have to put into it and it’s about things you really would never think of until you’ve lived it. It’s a delicate balance – a terrifying walk across a tightrope trying to get everything to be just so.
For example, doctor’s appointments. Don’t dress too nicely, or you’re not that sick. Don’t dress too grubbily, or you’re merely depressed. Find the balance between comfortable and too nice, which is hard. Don’t put too much effort into it, but don’t be completely lazy. Don’t be too honest and open about your symptoms, or you’re drug and attention seeking. And don’t try to brush it off, or it isn’t that big a deal.
Choose what you’re doing today. Going to send out some emails? Make some phone calls? Do some paperwork? Clean the apartment? Visit friends? Cook supper? Chances are, you can’t do it all. You have to decide what needs to be done, and what can wait. And even if it all needs to be done, it often just isn’t possible.
Use your mobility aid and get stares, comments, and judgement. Don’t use your mobility aid and get stares, comments, and judgement. Take your medicine in public and hear the whispers and comments about the druggie. Don’t take your medicine in public and get hella sick.
Go to the ER and get treated like shit. Don’t go to the ER and get sicker and sicker, but you just can’t deal with the judgement. It isn’t so cut and dry when you’re chronically ill. It isn’t so simple when your life is doctors and illness.
You sit around playing video games, watching movies, and reading. You’re lazy. You’re not really sick. You go out and spend time with people. WOW NORA, STOP PUSHING YOURSELF. YOU REALLY NEED TO TAKE CARE OF YOURSELF.
You feel bad for not Doing The Thing with your friends. You feel bad for Doing The Thing because you feel like a party pooper and an inconvenience. Do I tell them about my allergies and places I cannot eat, and look like a pain in the ass, or do I keep quiet and just eat when I get home? Do I take care of my mental health or my physical health, which sometimes overlaps and sometimes doesn’t?
Do I take the meds that make me feel better, even though I live with horrid side effects, or do I forgo the meds because the side effects are unbearable?
And the other aspect of the job is juggling all the things. Doctors. Therapists. PCAs. Homemakers. Nurses. Some come to your apartment, some don’t. You get judged because “someone with THAT many appointments shouldn’t have this much time to spend online”. (Clearly, you haven’t been in a doctor’s waiting room. You NEED something to do). You get judged if you pull back because people get worried.
Do I try to knock out the appointments at once, or break them up? Do I get up early to get in sooner and then be out of commission for days, or do I wait months for an appointment? Do I try to balance a job with all this, or am I forced to live a life under the federal poverty line? Do I try to go to school and get an education? But that opens a whole new can of worms with disability accommodations.
How do I find the balance? What if something happens and throws it off? Then what do I do?