For the last twelve years of being sick, I’ve been embarrassed by all of the ways my disease makes me “different” from everyone else. I may try to fit in, but I’m always waiting for the moment when people discover the truth about me.
From not being able to attend public high school, to going to therapy and appointments instead of hanging out with friends, to living with OCD and chronic pain, my experiences as a person with PANS and Lyme have isolated me from my peers when all I wanted was to be “normal” and feel accepted.
When I’m ill, my disease makes me live inside my head.
In those times, I hardly stand a chance at a “normal” social life, because I exist in a realm that makes some sense to me but no sense to anyone else. My thoughts go a hundred miles per hour, but if I try to communicate them with others, no one really understands what I mean—and I’m sure that I don’t interpret the world around me quite as others do.
An old journal I found from March 2011, when I was fifteen and undiagnosed, is particularly revealing:
“I feel like I live in a whole other world. I sometimes have trouble following a conversation or picking up on things. I often feel like I need to be shoved into a tub of ice-water in order to get out of my mental fog. No matter how much sleep I get, or how many cups of coffee I drink, I still feel like that. That’s the main reason I feel out of touch.”
But even as I get better and feel completely part of the world around me, and my illness impinges on my life less and less, I’ve realized that my confidence was a casualty of what happened to me—so getting better hasn’t released me from the predicament, either.
You see, PANS has a way of making you do and say and think strange things that you never wanted, and the problem is that you’re always lucid enough to know they don’t make any sense. You can’t help your symptoms, but because part of you is aware of how odd they are, you start to think they’re all your fault and a reflection of who you are.
And who wants to be friends with the person that does things like drink shower gel, cover her shoes and the entire floor in plastic wrap, spend hours stuck in one position, talk about wanting to die, and get mad at you for things you didn’t do?
In a flare, I feel like a crazy monster.
Even in better moments when I can leave the house and appear “normal” from the outside, I’m sure everyone will somehow figure out I’m a freak and want nothing to do with me anymore.
After being sick for so long, the notion of being a “freak” is so internalized that, even now, I’m still afraid if anyone gets to know me, they’ll see what I really am and not want to be friends anymore.
However, at this point, after six months of the “Duke Autoimmune Encephalitis Protocol” (monthly 1 g/kg IVIG + 1 g Solumedrol), I no longer think of myself as a person with a serious illness—I’m just “me;” I’m in school full-time, holding down an assistantship, and living on my own (albeit in student housing). On the surface, it’s easy for me to “pass” as typical now.
Nevertheless, there are plenty of reminders in the way I live my life that I’m not really a “normal” twenty-something yet. I still follow a restricted diet, have intense monthly IV infusions, take 20+ pills per day, go to bed early even on weekends, and see more medical professionals in a month than most see in a year.
I’ve forgotten how strange my life really is because of my illness, so when I spend time with others my age who don’t do these things, the juxtaposition confronts me with a truly awful part of my existence that I wish weren’t there. Of course I’m incredibly grateful that my treatments and lifestyle changes are healing me, but they remind me that I’m “different,” and sometimes that brings me down.
I have a few friends here at school that I don’t know very well, and no one knows of my illness. I feel like anyone who wants to be close to me will have to learn a little bit about the battle I’ve been fighting for the last few years… But what if they think I’m a freak when they find out I’m not “normal”?
And that makes me ask myself: would anyone want to befriend a chronically sick nerd whose main hobby (this blog) she can’t discuss?
Would anyone want to hang out with a twenty-something who can’t drink, can barely exercise, and can’t participate in any kind of outing that lasts more than a few hours?
Would anyone want anything to do with me when they find out I lost my adolescence to this disease and am therefore, in many ways, more like a teenager than an adult?
But you know what the answer is? Yes—they already do.
My illness doesn’t define me. Even if I can’t believe it, the friends I have like me for the person I am—not because they mistakenly think I’m “normal.” I’m starting to believe that when the time is right, and I share my story, they won’t think anything less of me.
For so many years, I wanted desperately to live a “normal” life with a “normal” brain. Though I still hope there will be a day when I don’t have to think about my health so much, I’m not ashamed of what makes me “different”—my story is part of who I am.
The world has enough “normal” people—but only one you. Why be “normal” when you can be who you are, with all of the unique experiences and perspectives that no one else but you can bring?