Walking The Invisible Illness Line
I’ve been bed-bound for the better part of three months now since I had a cardiac episode due to medication induced hyperthyroidism. I’m grateful I no longer need a wheelchair and can manage a 5 minute walk with the dogs and my husband in the evenings. But for the greater part of the day, I’m still stuck in bed.
I’ve watched so many documentaries, movies, and TV shows. And as much as I enjoy reading, cognitively; it’s become a challenge to spend the whole day focussing on small type. I find audio books to be more akin to auditory noise rather than being enjoyable, so that rules these out. Which makes the discovery of downloadable learning TV apps something of a revelation.
I recently downloaded Coursera and I’ve been learning about learning and memory, which is both interesting and useful—in that I have the gene for early onset Alzheimer’s disease. So keeping my brain challenged in doses I can manage, will hopefully help to stimulate my brain to keep creating healthy new neural connections. Next I’ll probably do some courses on mythology but it’s a comfort to know I have a way of keeping myself occupied in a way that is good for my brain health, and my mental health. Because all that free time can make my thoughts spiral at times—which I think is natural, and to be expected.
We are creatures of habit, yes. But we all also want to feel like we are leading meaningful lives, and I think this is the cruelest part of being chronically ill.
Whatever you enjoyed before gets taken away. Then come the doubters… the doctors, the comedians, the social commentators and painfully, family members, or so called friends—all eager to stick their claws into you when you are at your most vulnerable. And there’s only so many times you can hear the empty words “get better soon”, or “have you tried yoga or meditation” before it starts to erode away at your soul. The truth is I think there is no way to successfully walk the invisible line of trying to make the best of your lot, and convince people that you are also chronically ill.
The line itself is so faint, as to be invisible to most.
Society wants you “whole” or in hospital… there isn’t much room, or understanding, for anything in between. We have to learn to accommodate the grief that comes with being socially maligned, which is something I still struggle with almost every day, alongside having to advocate for myself to get assistance to manage my health. These burdens, social, mental, monetary, access to healthcare, loneliness, and more—are not challenges that any person should have to face alone.
But if I have learned anything in life, it is that there is always power in knowledge. So while I continue to try and navigate the invisible illness line, I’ll be learning about myths and poetry, and continue to take comfort in other people’s autobiographical tales of misery. Because being chronically ill is a tragedy, and as the saying goes misery loves company.