I recently received a tweet from @megannenicole suggesting I write about “ways ppl with MS (or chronic cond) can manage their symptoms without being a walking billboard for them.” Which I interpreted to mean, How to cope with something that sucks without becoming a sucky person.
Spoiler: I suck at this.
I hate how much of me is multiple sclerosis, and I often feel like if I’m not exactly a walking billboard for MS, I’m at the very least, a tripping one.
Worst. Billboard. Ever.
Billboards are in your face eye sores that try to make us buy stuff. They’re so tacky that they’re banned in Vermont because Vermont is a classy place. But what exactly is an MS billboard trying to hawk? Are you the tragic main character of your own life story? Someone to be pitied and held up to the masses as a reminder that their lives could be so much worse? Is MS all you ever talk about?
DO YOU HAVE A FREAKING MS BLOG?
My anxiety of becoming this kind of roaming advert is that MS is already too much of my identity. We’re cautioned not to let multiple sclerosis define us (which, btw, feels like code for I’m sick of hearing about your disease drama, can’t we talk about ‘housewives’ already?). We pretend MS is NBD and say things like “I have MS but MS doesn’t have me.”
Identities are built on things we choose – our music, how we dress, what kind of avocado toast we prefer…as well as what’s imposed upon us – where we were born, how smart we are, what kind of parents we have. I didn’t choose the freckles on my face or the absurd length of my toes, but they’re a part of me. Consideration of our brands, if you will, is more important than ever (if you’re unclear about yours, just look at your social media), and a diagnosis of MS can force an identity crisis. I’m regularly asked “What’s wrong with your leg?” While I’m tempted to say I was in a fight with a gang of city raccoons, I almost always confess to having MS. This is inevitably met by weirdness and comments like, “I’m so sorry. That must be terrible.”
What do you say to the rando who just told you your life sounds like a nightmare? What do you say to yourself?
It’s tempting to deny the MS part of my identity, and when my illness was still invisible, I did just that. It didn’t feel healthy to reject the part of me that is multiple sclerosis, but it didn’t feel right to embrace it either.
Disability highlights what we can’t do and encourages us to define ourselves based on our limitations. I can’t drive, so that goes on the list. I can’t run. I can’t walk without assistance. That goes on the list. I can’t even pee without accessories.
I can’t. I can’t. I can’t.
I can’t change a tire, but that doesn’t feel like part of my identity. I can’t keep a houseplant alive, and I can’t play the accordion (though I really wish I could). What can I do? Surely that list must be longer. I mean, I can breathe. It’s blurry, but I can see. I can mix a mean martini. I can rock a red lip.
I can speak French, mes petites têtes de chou.
What if identity were independent of physical impairment? What if who I am has more to do with what I do vs how I’m able to do it?And there it is. My lightbulb. I can’t embrace MS as a part of my identity, but accept it I must. Feeling like I need to hide a part of me, of who I am, is not healthy. If I want peace, if I want there to be less stigma, I can’t be afraid or ashamed to put MS on my list; to claim disability as part of my identity. Not to be swallowed up by it, not to let it diminish my other qualities, but to simply claim it and then continue being my bad-ass self.
Who am I without MS? For better or for worse, that person doesn’t exist. I can’t be divorced from MS any more than I can be divorced from my freckles or my freaky toes. I mean, maybe my toes are disturbing to look at, but my freckles are adorable. Why?
Because I say so.
You say sun damage and I say goddamn angel kisses. I’ll never think of MS as charming, but I realize I choose how to perceive it. Society may have its own pitiable, powerless narrative about chronic illness, but I don’t have to buy that lazy, uninformed description. What the eff does society know anyway?
None of us are equally abled. Disability is a lot more normal than we give it credit for, and a reality most are eventually faced with in some form or another. None of us gets out of this life alive.
Cultivating a strong identity and positive sense of self with chronic illness is empowering. It’s what facilitates being treated fairly and equally. It gives us the courage to advocate for better conditions and like, main floor bathrooms in public spaces (cough, Toronto). Perhaps instead of feeling like I’m the Times Square of having MS, I could just have a little ad on kijiji. Perhaps instead of the old I have MS but MS doesn’t have me adage, I will say “I have MS. I am not MS”. Or maybe I’ll just move to Vermont.