I Have a Chronic Illness. Please Don't Call Me a Survivor.
You’re a survivor. You’re so brave. You’re so strong. G-d bless your… whatever.
Singular words can’t possibly encompass the experience. I find it infuriating.
The days before diagnosis. Of symptoms and feeling sick, pain and fear. Of doctor appointments and referrals. Labs and X-rays and scans. Referrals to specialists. Of self-doubt and fear. Of increasing copays and bills and no end in sight.
Then of diagnosis. Of relief and dismay. Fighting with the insurance company and expensive medications. Of both support and unhelpful suggestions from family and friends. Of spiraling down the Google river and learning more than you ever thought possible.
And of living. Of struggle and search for a balance with life. Of knowing this is forever. Of finding a partner. Of family. Of fear of having kids and passing it down to them.
Of developing habits and self-care. Of hiding. Of making new friends who understand, and relishing the family and friends who have stayed with you.
It’s not enough. There are not enough words to compass the entire experience.
Of fleeting moments and the people who come and go. Of how the medications mess with your body and how your finances are stretched. Of the sheer power your body has over you. Of trying to differentiate who you are both as an individual and as someone with a chronic condition.
Don’t call me a survivor. I haven’t survived this since I’m still living in it.
Don’t call me brave. I think bravery is in a circumstance, but this is my life.
Don’t call me strong. I have no other choice. I fight to live the best life I can.
And frankly, if G-d has anything to do with this, I have a lot of serious questions, so hold on and let me start my list.
This isn’t a battle.
This isn’t even a war.
It’s a life. And there’s absolutely no way you can boil down what any of us experience into a platitude that makes us feel better in any way.
It’s my life. And this chronic experience is so much more than a single word.
Hear me roar.
This story originally appeared on Salt and Sage.
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