What’s The Big Deal About Coming Out With MS?
What’s The Big Deal About Coming Out With MS?
One night, years ago, The Banker and I were out for drinks with some new colleagues of mine. Between antipasto and mouthfuls of montepulciano, the conversation turned to trading tales of lowkey medical trauma, like the time my high-school boyfriend accidentally ice-skated over my finger. You know, the horrifying stories of slamming your hand in a car door, or punching yourself in the face as you attempt to put on a bra; anything involving crazy-glue, a crème brûlée torch, or a mandolin, really.
Not one to let a gross story go to waste, The Banker started sharing his own cringe-worthy anecdote–well, our cringe-worthy anecdote–about the time we were in a Montreal hotel room when my DMT’s auto-injector jammed. While The Banker tried to solve the problem, the device suddenly sprung back to life, catapulting the syringe full of potent medication into the air before landing it dramatically in the centre of TB’s bare-footed big toe.
Of course, TB never got to share the climax of this harrowing tale. Almost as soon as he started talking, he panicked and went pale as he realized he was outing my MS. His attempt to bail on the story only made things worse as his sketchy plot holes made it sound more like a heroin experiment than however he thought he was spinning it. I should have re-directed the convo by outing his third nipple, but I respect boundaries and that’s his story to tell. Instead, I jumped in and confessed the truth: actually, I have MS.
Wait, what? Who doesn’t know you have MS?
When I was first diagnosed, I never thought people would treat me differently because of it. I was open about my MS.
I also used to think mermaids were real and that vodka won’t give you a hangover. I was wrong on all counts. I quickly learned that people do act differently when they learn you have a chronic illness like MS. Not always, but enough to make me wary. And eventually, the pressure to prove my invisible illness, the dismay of being treated like damaged goods, and the fear of being left out or left behind, led me to start keeping my MS classified.
Passing as non-disabled
There was something intoxicating about passing. Staying silent meant I could be Ardra, instead of Ardra-with-MS. But it was an imperfect solution. Keeping secrets is stressful, and MS will try to reveal itself in ways that those of us who live with it don’t always recognize are our ‘tells’. I’ve been asked about my fancy walk, and why my fonts are so big you can see them from space.
I remember the lunch with a new friend, when I was just learning to self-catheterize and had spent an unexplainable 45 minutes in the bathroom. I remember stumbling into an audition, certain the panel thought I was drunk. I remember the European choir tour (where, like everyone, I actually was drunk) but the amount of rest I required led to rumours I was pregnant.
I was more comfortable being thought rude and reckless than sick and disabled.
Coming out with MS
Coming out and passing are terms we associate with the LGBTQIA community. The disability community is marginalized in different ways, but members of both groups have felt the need to hide an identity over which they have no control. Both communities fear how disclosure could impact careers, relationships, and safety. Both communities risk being isolated, stigmatized, and seen as less-than. Just like homophobia, ableism exists.
If you haven’t watched Netflix’s Special do it now. I mean, finish reading this, and then watch, obvi. Ryan O’Connell’s character (adapted from his real life) is a proud gay man who allowed his new coworkers to believe he’d been hit by a car, knowing it was a more palatable explanation for his own fancy walk and unexplained behaviours than coming out with the full truth, that he has Cerebral Palsy.
A recent study shows that for many with MS, the ‘should I/shouldn’t I’ decision can be serious enough to cause anxiety and depression. It’s not enough to be told that the world will understand and that the law is on our side. Because, is the law really on our side when there are systems in place that keep disabled bodies out of sight? When inaccessibility is standard, medications and medical equipment aren’t affordable, and people with disabilities regularly have to fight for benefits?
Coming out with MS can be scary
It can be terrifying to tell someone in a position of power or influence over your life, or even someone whose opinion matters to you, that you have MS, when it’s still acceptable to say, think, and believe that able bodies are better than disabled bodies. To be clear:
Able bodies are better than disabled bodies is still something you can say out loud and not get canceled. You might even believe it yourself.
It’s equally acceptable to react with horror at disability; and if you think I’m being dramatic, let me remind you of Tiktok’s viral new teacher challenge where parents–PARENTS–used photos of people with disabilities to scare their children.
The cost of keeping quiet
And so we hide our MS, like it’s something to be ashamed of, from the people we depend on for survival. Who wouldn’t want to keep this shit on the downlow? Sure, passing has it’s perks, but that doesn’t mean it isn’t hurting you, or the rest of the world for that matter. The obvious cost of keeping quiet is that we are left to fend for ourselves, without necessary accommodations. This can lead to frustration, fatigue, and a reduced ability to perform the tasks of daily living. And keeping quiet can have other consequences too.
Eventually, keeping MS my sick little secret felt gross, like a betrayal of myself.
When we don’t feel safe enough to disclose our MS, we end up reinforcing a damaging message to ourselves that we have something shameful to hide. Even the language around sharing a diagnosis as something that needs to be disclosed suggests there’s something sneaky going on; something that needs confessing.
Worse still, we are never free to truly be ourselves. Our sense of self-worth becomes dependent upon maintaining a lie. When we say that’s not me, I’m not one of those people, we perpetuate the stigma around chronic illness. We let the status quo go unquestioned, and we send ourselves the dangerous message that disability is a choice one can simply opt out of.
Humans have a need to fit in, and the desire to be included is powerful. But disability is the largest minority in the world. And yet, we haven’t found safety in numbers, let alone pride in identity. So many people live in fear of being found out and seen as damaged, broken, sick, less-than. Disability IS normal. If we can’t raise a hand and say this is me, this is what MS looks like, then we can do nothing to undo the myth that we are different, strange, less-than, other.
So, you’re telling me I should always be open about my MS?
Hell no. You don’t have to tell everyone, or anyone about your MS. Even with a gait that gives me away and an openly MS internet presence, I still find plenty of opportunities to deny nosy randos access to this kind of intel. Not because I’m ashamed to have MS (I’m not), but because I’ve decided it’s not in my best interest. I don’t owe anyone an explanation for how I move through the world. And neither do you.
Coming out with MS in a positive, empowered way takes practice. It’s hard to acknowledge membership in a group that literally no one wants to be a part of. It’s hard to claim status in a society that has a hierarchy of bodies that values productivity and so-called perfection above all else, but asserting our right to be meaningfully included is exactly what we need to do.
In a more progressive world, where disability is no longer misunderstood, stigmatized, and seen as a liability, people with MS would feel safer sharing their health status. Until then, we can’t advocate for our needs or dismantle stigma and ableism without being open, vocal, loud, and proud.
Nobody said progress was easy.
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I love reading your posts, thank you for your positivity. I intend to keep on truckin’ (onwards n upwards is my mantra) ? best wishes to all my fellow MSers ??
Great article Ardra! Xx
I’m finding out the very hard way that if I appear disabled, frail, etc., people take advantage if we appear vulnerable. I do not make these mistakes anymore, a 50k lesson from people I hired to help with home renovations. Nothing is done! After 50k, and nothing like this ever happened before. I prefer being thought of as. B**ch, that a B**don!
Just found you today, & I’m grateful to have found such a great source, especially love the humor!
So much better to laugh than cry✔️
Love your wit, and excellent content! You are an MS Rock star ⭐️ ? ?
Love reading your posts!
If someone asks or comments, I may or may not disclose depending on the day and how I feel in that particular moment. MS symptoms can come and go in the blink of an eye (sort of ??♀️) as does my willingness to share…I just never know.
This is EXACTLY what I needed to hear today. I was thinking earlier about all the people I still haven’t told about my MS (i.e. most of them) and wondering how long I’ll still be able to ‘get away’ with it. And you’re right, Ardra, that’s such a fucked up way to see not only myself but also everyone else in this massive MS gang we’ve all joined whether we like it or not. Thank you.
Ugh.. this is always on my mind. I was diagnosed 10 years ago, and only my family, my husband’s family and a teeny few friends know. I went back to work (with a cane for a while) and just gave vague answers to all the questions. I was sure I’d be fired (for no reason really, it doesn’t affect my job at all) and before that happened I’d just be subjected to over the top drama, pity, aggressive questioning, etc. I just can’t stand the thought of being treated like that, keeping things as normal as possible is key to why I’ve done as well as I have. I have drop foot and it’s obvious, but for me, keeping it to myself has been the better option. Although it’s exhausting..
Thank you for writing this post. I was diagnosed 4 years ago – but the only people who know are my doctor, partner and closest family members. I’ve been lucky so far in that my symptoms have only ever been mild and short-lived, so I haven’t been forced to tell anyone else, but I think a lot about whether I’m doing the ‘right’ thing by keeping it quiet. My reasons are complicated, but this post has given me plenty to think about. Thank you.
Nice handle ?
You’re absolutely right. It’s complicated.
If you tell the inquisitive that you have brain damage they seem to vanish, thereby sparing you further grilling.
Barbara
My husband hates it when I say this! ?♀️
This is fab. I can hide having MS for about 20 minutes and then someone wonders why I have suddenly developed a limp/why I suddenly walk slowly/why I sit down for several minutes to recover/why I randomly trip and look as if I am going to fall over. I have stopped caring and started sharing because I hate the thought of someone thinking I am drunk walking my daughter to school!! I think I am probably still judged for many other parents who do not know but being more open has made me feel less embarrassed.
It’s exhausting to be constantly concerned or even just aware of the judgement of others. Thanks for sharing,
Ceri.
When I was first diagnosed, I had just become a Canadian citizen. For a while, I wondered whether I was trying to fit in because MS is “Canada’s disease”. I have a stand-up bit that I never performed about MS. I wondered why Canada didn’t have some other national disease. Like broken limbs. Considering how fond Canadians are of hurtling down the sides of snowy mountains with bits of wood strapped to their feet; you would think that broken legs would be an epidemic. The good thing about a broken leg is it heals. I’ve been told that the damage due to MS is permanent.
When I initially went to see a neurologist I was told that there was a chance that my “tumefactive” lesion could actually be a brain tumour. I told the neurologist that I hoped it was a brain tumour. I’d have an operation to remove the tumour. I would lose some brain tissue but due to brain plasticity other areas of my brain would compensate. Further MRIs revealed more lesions. It wasn’t a brain tumour.
Brain tumours get such a bad rap.
I love EVERYTHING you write ?, so real and encouraging to keep going on with my head up high.
After 10 years of being diagnosed and having come out about MS (not my MS, that s*#t is not mine at all) I feel a bit ‘ashamed’ when it comes the mild disability that it is now a new part of my life… these words of you have just reminded me I’m still me! Great, kind, and full of good things to share
Thanks Ardhra ❤️❤️❤️
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Once again I find myself teary-eyed reading one of your posts. As a member of the LGBTQIA community with MS, this post really hit home. I struggled for many years hiding a large part of my identity from family and co-workers before saying F*** it and living my life for me. Best. Decision. Ever. A little over a year ago, I was diagnosed with MS and unceremoniously shoved back into a closet. Every day since my diagnosis, I think about who to tell, when, and how. Work is a struggle, wondering what would happen if someone finds out but also wanting to explain not-so-obvious symptoms like cog fog and exhaustion. Your post is an excellent reminder to embrace my MS identity and again say F*** it and get back to living my life for me. Thank you, thank you, thank you!
Thank you for sharing your story. I’m so glad this post resonated.
Great article, Adra. It resonates with all of us who live with MS.
Shortly after being diagnosed it was impossible to hide my ever-growing list of symptoms. I wish I would have had more time to work and save extra money, but I worked in Healthcare and couldn’t risk accidentally hurting a patient because my hands would jerk or I’d lose my balance and fall on someone. Back then I truly never cared what anyone thought about me, but your article has shown me different for others. And medical trauma is real. The pain after my 1st relapse and the subsequent interminable pain from a Progressive MS body has changed me. I worry more now than I ever did in the past. Thanks for helping me see that others go through things in stages because I think I had to go through everything in my own experience all at once. This has increased my compassion not only for others, but also myself. I am shocked by all I have gone through in one month compared to others who go through things over time. I think I can read others trials with more compassion now.
Thanks for this insight, Tina. I often say that grieving and processing MS doesn’t usually happen all at once. Every time we get a new attack or symptom it can feel like adding a whole other disease. There are so many physical and emotional and social milestones that come with an MS dx.
Thank you again for putting into words similar ideas, thoughts and feelings that I often have floating around in my head and heart about this disease and my experiences with it. Reading your posts brings some clarity to my often very confused emotions about this all and helps me feel less alone. Thank you!
Thanks so much for reading. I’m glad these posts resonate!
I was diagnosed in 2014 and recently had to go on permanent disability as my symptoms started piling up without remitting. I was with the same company for over 20 years and have many friends there. They all know I have MS but I’m on the fence about social occasions with people I won’t see again. I’m not retired and if people ask if I’m working I don’t want to get into the explanation about my illness. I could always change the subject. “Would you like some more wine?”
Thanks for writing, Krys. So relatable. “So, what do you do?” should be banned from small talk forever. It’s the worst way to size someone up.
As usual a great and timely post. You put everything in such accurate terms. I feel all the things you talk about but don’t know how to express. I feel ashamed if this secret I’ve held onto for over 23 years. Former coworkers that I hid my diagnosis from and still do, I have lost most of my friends d/t this disease and also moving to another state hasn’t helped. I don’t cry often but when reading what you wrote and now writing this comment I find myself thinking of what could have been and what is my reality now. I have certainly tried to fight this in every possible way but it is all catching up with me and as I get more and more disabled I try not to feel a sorry for myself. I have never felt sorry for myself and I wonder if I was being a little too cocky all these years. Well now is the time to keep on keeping on like a warrior. This Covid pandemic hasn’t helped me and I feel.it has further isolated me. With the nicer weather coming I’m hoping to get out more and improve my mental health. I have pretty much figured out the rollator and scooter part of things. I am now also the owner of a lightweight w/c for when Ms is trying to make me its batch. I will never give up. I’m pretty proud that last Saturday I got my 1st vaccine. If MS hasn’t taken me down, I’ll be damned if I let this virus take me down! I’ve fought for too long. Thanks Ardra for always saying what we can’t seem to say ourselves. ❤??
Thanks for sharing, Vicki. 23 years is a long time to carry something like this. I’m glad you got your first shot and hoping you can enjoy the spring weather. It sounds like you have a lot to be proud of.
28 yrs later..family knows but only certain friends and few neighbors know. Damn if I want to be known as the ms-chick. You hit so many points that have ruminated in my brain over the years. Oh that limp..It’s just my hip acting up again.
After 20 years since diagnosis (9.11!) and 18 years as an office admin, very few people know about the MS. I have been able to work at home this last 1.5 years which greatly reduced walking opportunities as the distance from bedroom to office is about 15 steps. But it does give me up to 30 minutes to get dressed. That’s a win. The trouble with less exercise is I am less able to exercise. Those dang feet, on a whim it seems, don’t want to lift and I have multiple bruises and 4 broken ribs over 3 falls as a result. The cane doesn’t always prevent a fall but it does make some buildings and shops more accessible.
Thank you for your candid, humorous experiences. So many of us in the MS club have ‘been there, done that’.
Needed this article today. I need to have a talk with my boss about my workload and I just don’t want to say it out loud. I have always been able to handle extra work and projects but not right now. I need some real rest before I relapse. 60 hour weeks are wearing me out and I’m over stressed. Terrible combo for me.
Oh wow. I really hope you can get the rest that you need. This disease will not be ignored.
I was just diagnosed a month ago but have had symptoms for about 10 years. Nothing that kept me from life, just some annoying numbness, twitches and occasional one sided hearing loss. But now with conclusive and obvious symptoms and a diagnosis I don’t know what to do about telling folks. I’m afraid that if I let it out of the bag I will lose business, if I’m able (hopefully) to work again. I do fine line, detail focused tattooing and I don’t want people to think I’m giving them a less than professional piece of work.
This blog post gave a lot of positive hope for me. Really all of your posts do. Thanks for being there and letting us know we aren’t alone!
Thanks for reading and for commenting.
The decision to share or not share is tricky. Just remember: you don’t owe anyone an explanation, but sometimes it can be liberating to share our dx. Do what feels best for you.
It’s May, 2023 so this post is older. But I remembered its existence and came here to find it. I needed to read words of both comfort and wisdom from a maven who has BTDT.
I was diagnosed recently, in 2020, at the ripe old age of 48. In actuality, I’ve likely had MS since 2013 when I had optic neuritis. It’s been a good run…..until now. A wonky leg started up, this lead to an urgent MRI (in less than a month in Ontario! Miracles exist! LOL!).
My……first…..cervical…..lesion.
Gutted. Scared shitless. Vulnerable. Embarrassed. Angry. But most of all TERRIFIED that my secret is starting to become outwardly revealed. All the brain lesions symptoms of occasional stupidity, forgetfulness and lack of word recall, when noticed with a raised eyebrow from others, could be easily laughed off with a wave of my hand, blaming a poor night’s sleep or some other common, humorous, socially acceptable self-denigrating remark. But walking with a limp? That’s going to be harder.
Anyway, after that long diatribe, I wanted to thank you for a post that speaks to my innermost thoughts, at present. Words matter, Ardra. You matter. You are leaving a positive impact on this world. So, thank you for allowing this old bird, who just swallowed down her day’s worth of steroids, while sipping coffee from the couch on a Saturday morning, to feel a little less anxious about my future place in this world.
Thank you for this heartfelt message, Melissa. It means a lot to know that there’s consolation to be found in some of my words. Hang in there and don’t forget to buy yourself a present. Steroids are the worst and I hope you’re back to baseline soon.
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