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.”
Uhm, okay.
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.
16 thoughts on “Do You Hate Feeling Like A Billboard For MS?”
Joe Thomas
I told a friend of mine to tell people at her work that she had a football injury, when they would ask her why she was limping and using a cane. People aren't malicious. They just are nice. One doesn't want to hurt their feelings but sometimes it can get tiresome to explain the 5Ws and the H of MS, to everyone who asks solicitously after your health. (who, what, where, when, why and how)
I agree Joe, most people are well intentioned. If I were to say I had a football injury that would defo invite some raised eyebrows. It's never an easy question.
Wow – this really hit home, today of all days. I had a mini meltdown (tears and all) and really needed to see this post. How's that for timing? It's perfect! All better now and making dinner ;)) Barbara
Thanks for sharing Barbara, I'm so glad this helped. I think it helped me stave off my own meltdown by writing it. I hope you're having a generous glass of wine with dinner!
I think this is such a conundrum. I'm of the view that our illnesses do define us…well, me anyway. When I wake in the morning, the first thing I have to do is assess how I feel. Is bipolar going to have me crying like a little bitch all day or am I going to be all "hey man, is cool, we be cool"…I've tried the "It doesn't define" me school of thought, but when I realized how much bipolar plays a part in my life, I almost depend on it now to know who I am, how I'm going to feel. My husband has Rheumatoid Arthritis (I know, we're a really cute couple) so he walks with a cane sometimes depending on his pain threshold. Not one decision is made without taking his pain into consideration. Can we go to IKEA? Probably not if he's having a bad day because that store is so humongous the guy can't make it up the stair case, never mind the winding aisles. Yes, we have an identity beyond the illness, but without taking into account the illness, how would you explain some of the behaviours that now encompass our lives?…Wow, how's that for waxing philosophical…this was an amazing post, and I laughed at your comment about telling people you were attacked by raccoons when asked about your leg. I say you should totally use that line next time someone asks.
It's all about acceptance. I no longer hide away afraid to be seen with an AFO and a cane. I no longer look away or at the ground when passing people. I smile and usually get smiled back at and we all move on. I still have my meltdowns in private on occasion and I sure hate when I fall down in front of someone but I no longer hate myself.
Thanks Sandra. I try to stay as far away from IKEA as possible. It's a long road out and that road is filled with $2 things I never knew I needed so badly.
Falling always sucks. I feel like people are less likely to think I'm drunk-falling if I have a cane. Which is a win because that means I can drink more.
Hahahahaha…I still drive and a while back I stopped to get gas and stumbled as I got out of the car. This was early afternoon of course and I HADN'T been drinking yet!!! The woman at the next pump gives me the eye asking me if I was ok…we all knew she thought I was drunk! I had a friend in the vehicle who promptly came to my defence but the woman drove away and I know she was unsure! I didn't have my AFO on because I can't drive with it on. Anyways…long story but the point is when people see the the aids their assumptions are much kinder!
Hi I was told to accept it but that doesn't mean you have to like it! That worked much better for me as I thought accepting meant liking it! Now that was never going to happen so I accept it but hate the stupid #####!! Your blog is great and not sweet soppy like alot of them. We get the truth the way I feel with yours!!
Your posts have touched both my wife and I in ways I'm certain you never thought possible. I'm 54 and born with spina-bifida and my wife is 53 and born with cerebral palsy. We joke abut the idea that together we have on pair of fully functional legs. We both struggle with the identity issue and maybe because both our maladies have been with us since birth. In a way we both believe it's some how easier for us because what we struggle with daily has always been there. Those with progressive degenerative illnesses like MS etc. must deal with the loss of what once was and that has to be harder than our daily impairments. I just want to say thank you for voicing what both of us have felt at different times. Also we are mutual friends with your Ginger Besty. All the best and please keep sharing, your touching, helping and strengthening so many. Fred Barras
Fred, thank you so much for reading and for these generous comments. I'm so glad you found me, and we're all better off for knowing the Ginger Bestie. I've often wondered about how different the experience of being born with/vs acquiring disability. I'm sure one's not better/worse than the other but that there's a different kind of grief over how our bodies might let us down. Be well and thanks again for reading! A.
I did not enjoy the article fully! Yes my MS does define me . How can it not ?! Everything I do has to be met with”how s as n I going to do this or that !” From the minute I wake up it is in my face . It changes daily , but I make it work . I am always looking for ways to make things work for me. I have good days and bad days , like must people , but I try to stay upbeat and joke about it. It does not bother me most of the time when people ask me about. Depending on the person I will say “ I have MS and yes it sucks, but what other options are there , gotta move on,right ?” So that’s the way I roll. I have MS ,and it does define me😁
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I told a friend of mine to tell people at her work that she had a football injury, when they would ask her why she was limping and using a cane. People aren't malicious. They just are nice. One doesn't want to hurt their feelings but sometimes it can get tiresome to explain the 5Ws and the H of MS, to everyone who asks solicitously after your health. (who, what, where, when, why and how)
I agree Joe, most people are well intentioned. If I were to say I had a football injury that would defo invite some raised eyebrows. It's never an easy question.
Wow – this really hit home, today of all days. I had a mini meltdown (tears and all) and really needed to see this post. How's that for timing? It's perfect! All better now and making
dinner ;)) Barbara
Thanks for sharing Barbara, I'm so glad this helped. I think it helped me stave off my own meltdown by writing it.
I hope you're having a generous glass of wine with dinner!
I think this is such a conundrum. I'm of the view that our illnesses do define us…well, me anyway. When I wake in the morning, the first thing I have to do is assess how I feel. Is bipolar going to have me crying like a little bitch all day or am I going to be all "hey man, is cool, we be cool"…I've tried the "It doesn't define" me school of thought, but when I realized how much bipolar plays a part in my life, I almost depend on it now to know who I am, how I'm going to feel. My husband has Rheumatoid Arthritis (I know, we're a really cute couple) so he walks with a cane sometimes depending on his pain threshold. Not one decision is made without taking his pain into consideration. Can we go to IKEA? Probably not if he's having a bad day because that store is so humongous the guy can't make it up the stair case, never mind the winding aisles. Yes, we have an identity beyond the illness, but without taking into account the illness, how would you explain some of the behaviours that now encompass our lives?…Wow, how's that for waxing philosophical…this was an amazing post, and I laughed at your comment about telling people you were attacked by raccoons when asked about your leg. I say you should totally use that line next time someone asks.
It's all about acceptance. I no longer hide away afraid to be seen with an AFO and a cane. I no longer look away or at the ground when passing people. I smile and usually get smiled back at and we all move on. I still have my meltdowns in private on occasion and I sure hate when I fall down in front of someone but I no longer hate myself.
Thanks Sandra.
I try to stay as far away from IKEA as possible. It's a long road out and that road is filled with $2 things I never knew I needed so badly.
Falling always sucks. I feel like people are less likely to think I'm drunk-falling if I have a cane. Which is a win because that means I can drink more.
Hahahahaha…I still drive and a while back I stopped to get gas and stumbled as I got out of the car. This was early afternoon of course and I HADN'T been drinking yet!!! The woman at the next pump gives me the eye asking me if I was ok…we all knew she thought I was drunk! I had a friend in the vehicle who promptly came to my defence but the woman drove away and I know she was unsure! I didn't have my AFO on because I can't drive with it on. Anyways…long story but the point is when people see the the aids their assumptions are much kinder!
You my dear are a Goddammit Rockstar! Peace and love Sister!
Thanks brotha.
Hi I was told to accept it but that doesn't mean you have to like it! That worked much better for me as I thought accepting meant liking it! Now that was never going to happen so I accept it but hate the stupid #####!! Your blog is great and not sweet soppy like alot of them. We get the truth the way I feel with yours!!
Your posts have touched both my wife and I in ways I'm certain you never thought possible. I'm 54 and born with spina-bifida and my wife is 53 and born with cerebral palsy. We joke abut the idea that together we have on pair of fully functional legs. We both struggle with the identity issue and maybe because both our maladies have been with us since birth. In a way we both believe it's some how easier for us because what we struggle with daily has always been there. Those with progressive degenerative illnesses like MS etc. must deal with the loss of what once was and that has to be harder than our daily impairments. I just want to say thank you for voicing what both of us have felt at different times. Also we are mutual friends with your Ginger Besty. All the best and please keep sharing, your touching, helping and strengthening so many.
Fred Barras
Thanks for reading Jana! You're absolutely right.
Fred, thank you so much for reading and for these generous comments. I'm so glad you found me, and we're all better off for knowing the Ginger Bestie.
I've often wondered about how different the experience of being born with/vs acquiring disability. I'm sure one's not better/worse than the other but that there's a different kind of grief over how our bodies might let us down.
Be well and thanks again for reading!
A.
I did not enjoy the article fully! Yes my MS does define me . How can it not ?! Everything I do has to be met with”how s as n I going to do this or that !” From the minute I wake up it is in my face . It changes daily , but I make it work . I am always looking for ways to make things work for me. I have good days and bad days , like must people , but I try to stay upbeat and joke about it. It does not bother me most of the time when people ask me about. Depending on the person I will say “ I have MS and yes it sucks, but what other options are there , gotta move on,right ?” So that’s the way I roll. I have MS ,and it does define me😁