Quality of life doesn’t come already packaged in silver and glitter when you have a chronic illness. Nor do half-decent health and hard working doctors. If I don’t stay conscious of what quality of life means to me, my world falls apart at the seams. This is how I’ve done it.
Triaging the Hours
Triaging the way I spend my hours doesn’t mean putting medical appointments at the top of the list every day because, in contrast to popular opinion, sick people need to live good lives too. Five days a week in doctors’ offices and laboratories is not my idea of a fun time so I limit myself to two medical appointments a week unless there’s an emergency. Those five doctor-free days out of every seven make life worth living.
I can cope just fine with a whole array of awful side effects, but I turn into a whiney toddler if I’m drowsy every day. We can all happily tolerate different side effects, and when a medication is causing ones that drive you to drink, it’s okay to tell your doctor you’re not willing to tolerate it if there are alternatives.
For me, accessing the right meds often means embarking on the brave new world of off-label uses, and that’s okay. Medications don’t need to have my sickness on the box. They just need to work.
Some doctors are autocratic about treatments, but my quality of life can only happen with my input. That entails finding doctors who fight, not against my illness, but for a happy life as I define it. Such doctors are hard to find, but the hunt is worth it.
Empowerment: The Silver Bullet
Treatment resistance is not a synonym for doctor laziness. I’ve fired specialists, hunted out labs I like, and insisted on medication replacement despite my doctor’s refusal. There is a time to defer to the medical community and a time to advocate for yourself. Once I learned how to play a role in my care, I became “miraculously” healthier and happier.
Patient empowerment is not synonymous with being a stubborn and annoying patient. It actually improves medical outcomes, so telling a doctor I want to try a different approach serves more than just my sanity. Disempowerment might ultimately leave me dropping all of my treatments because I’ve burned out, so I work towards finding therapies that I can genuinely sustain long term.
The Hunt for Doctor Magic
The right specialist is sometimes more expensive per appointment but measured in fewer symptoms and the many other doc visits they negate the need for, they’ve saved me a fortune in cash and misery. Finding exactly the right specialists has genuinely changed my life: if you have epilepsy, use an epileptologist, not a neurologist. If you have diabetes, use an endocrinologist, not a GP.
Every now and then, the collective knowledge of 20 patients who have my illness has trumped the singular knowledge of one doctor. A vibrant community who has your disease is well worth tracking down. I’d never go so far as to follow their advice, but I do take their ideas to my specialists when they’re stuck. I’ve been correctly diagnosed by patients twice in my lifetime when my doctors were stumped.
One Hour at a Time
Being chronically ill has been a billion times easier when I’ve engaged so thoroughly with the present tense that yesterday’s medical nightmare and tomorrow’s shitty operation no longer existed in my conscious mind.
Doing an entire week of surgeries, blood tests, and crappy symptoms at once is impossible so I just get in the shower. Once that’s done, I just climb step out the door. When that’s done, I just sit in the hospital waiting room. Doing one tiny thing at a time is far easier than doing an entire month before it’s even happened. I try to get 11 ‘O clock out of my head. There is only now.
I think pity parties are a necessity when you’re ill because feelings need to be processed. I just make sure mine end. I give myself permission to rant and whine for a few hours. There. Now I’m ready to adult.
It’s All in your Head
In The Royal Navy they put you through physical hell, but as long as you’re coping mentally, you remain on top of the harshness. When you roll over and think you can’t do it anymore, that’s when you’re fucked, and so it is with chronic illness. The psychology of coping is often what keeps you alive, so ask for help. Get what you need. Don’t do it alone.