It takes work to get to constant doctor’s appointments and blood draws and urgent care clinics. It takes organization to remember where and when they all are and persistence to get insurance to cover them.
It takes ingenuity to budget time for medical treatments and figure out transportation when you have neither money nor a car. It takes ingenuity to find ways to get places when the obvious answers aren’t available to you and willpower to get through the pain or anxiety or depression when the best option is still a bad one.
It takes actively cultivating empathy to be emotionally supportive of your friends and family when you’re in chronic pain. It takes setting boundaries to sustain relationships with them where you aren’t exhausted or left out at the end of the day. It takes energy to explain over and over again what you can’t do and what they can do to help. It takes humility and clarity to ask for help when people might tell you you’re selfish for “bothering” someone like that. It takes strength to tell people “I can’t” when you know they really want to hear “I will”.
It takes courage to advocate for yourself to doctors who don’t want to listen to you. It takes bravery to talk to your healthcare providers about symptoms people say are embarrassing.
It takes attentiveness to keep up with different medications, some of which you need to pick up in person, some of which you only get a limited supply of at a time, some of which you need to see a doctor each month continue receiving, many of which make you feel even sicker than the illness they’re treating.
It takes foresight and planning to research places ahead of time to figure out if there will be accommodations for you and what options you’ll have if there aren’t. It takes backbone to ask for those accommodations when they’re available.
It takes fortitude to keep from losing hope when you find out yet another treatment isn’t going to work, or that the best you can hope for is only “some pain” and not “no pain”, or that you’ll never do that hobby you loved again.
It takes genius to figure out how to stretch $771 a month into rent, food, electricity, water, student loan payments, a bus pass and multiple $50 co-pays.
It takes determination to respond to threatening SSA letters by the deadline and be told a different thing by every person you talk to and put on hold and disconnected and forwarded to voicemail boxes that never call you back and know that you have to just try again and again every day until they fix the problem, even as the stress of not knowing if you’ll have money next month makes all your symptoms worse.
It takes patience and caution to budget extra hours into every errand you need to run because everything takes longer with pain or executive dysfunction or a wheelchair, and to budget extra days into all your deadlines because you know you can’t complete any task at all during a flareup.
It takes strength to ignore the people who hold you up as an example “what’s wrong with this country” or “faking it”.
These things all take so much work, effort, and energy. People who say disabled people don’t work can get bent.
