This blog post is sponsored by MS Healthline. All opinions are my own. I have partnered with MS Healthline to lead discussions on style, sexuality, and representation. Scroll to the end for deets.
When I was diagnosed with MS back in 2001, the internet was for nerds or creepers with hotmail. I assume. I mean, I honestly can’t remember how life was before Instagram, but I think I spent a lot of time at the mall, hiking up my low-rise jeans and listening to one whole CD at a time. Facebook wasn’t born yet. Amazon was just a river; and, if I’d wanted to know where, I would have had to go to the library to look it up. No thanks. But, when instinct told me I needed to connect with somebody—anybody who was dealing with the same unknown future MS had dealt me—I had to seek them out at a support group in a sketchy basement somewhere in the east end of Steel Town.
Oh, boo-hoo. Everybody’s future is uncertain. You don’t need someone with MS to relate to that.
Not to diss my friends and family, but our emotional needs can’t all be met by one person. I love my husband, but The Banker isn’t that fun at the nail bar, nor is he qualified to provide outfit approval. (That pink eyeshadow fail was not his fault; it’s Covid-times and I don’t have access to my usual squad.) The point is, it takes a village. If I want to polish off a bottle of rosé and gossip about the neighbours, I’m calling Lisa. If I wanna be talked into buying just about anything, that’s a job for Tracy. And if I need help hiding a body; well, I’m not naming names, but you know who you are.
Despite the love and support I get from my friends and family, it can be exhausting and futile to try to explain MS. When it comes to managing my MS, I’ve got a team for that too. In addition to my posse of medical experts, if I want the latest MS research dumbed-down for me, I’m emailing Wheelchair Kamikaze. I’ve been known to panic-text Bethy Bright and Dark while on steroids, and there are things I’ve said to Darcy that I’ve never said to anyone. Darcy can handle it.
Social networks aren’t going to cure your disease, but they are going to make it better. Loneliness has been proven as deadly as smoking. Covid is making isolation worse for everyone, and that kind of stress can impact sleep patterns and eating habits, and even shorten lives. If you have MS, you need an MS bestie. You probably need two. Why not? They’re free!
Why does misery love company? I wouldn’t wish this on my worst enemy, but my heart skips a beat when I meet someone with MS. Intimacy is created by swapping secrets; but, what happens when your secrets are completely unrelatable? I’ve fantasized about a magical compound where everyone has MS (like Crip Camp, but with fewer STIs and an open bar). Not because I want the whole world to have MS; but if everyone around me did have MS, I wouldn’t feel so freaking different all the time.
Connecting with other interesting, fun, cool, smart, accomplished, funny people who have MS is a reminder that I’m still those things too. It’s a reminder that it’s okay to have MS; that having MS is just another way to be human. Duh.
MS is often portrayed in a sanitized palatable narrative that can make you feel like you have the ‘wrong’ kind of MS if you don’t recognize yourself amongst the happy-go-lucky ice-cream eaters who appear unaffected by the disease. So many of us are encouraged to hitch our wagon to best-case scenario outcomes, that it can feel like we are the outlier, the exception—even the failure—if symptoms persist or disease worsens. It can be a relief to know someone else struggles the same way we do.
Most of us have been told not to let this disease change us. The pressure to be the ‘same you’ is a toxic message disguised as encouraging advice that doesn’t hold any space to process what we’re going through. We may try to keep up because we don’t want to be excluded. We might keep our feelings to ourselves because we don’t want to be a burden; we don’t want to be pitied; and we don’t want to be ‘all about MS’. With MS friends you can be the person you are, instead of the person you were.
There are so many life hacks I’ve sourced from other Trippers. There are even symptoms my docs have shrugged off: my freezing cold, purple fucking feet par exemple. Connecting with others who have the same gross photos to confirm my suspicions keeps me from the insanity of feeling gaslit.
When I was learning to drive, I remember feeling like it was this huge, impossible thing, until I reminded myself of all the not-quite-as-smart-as-me bros I knew in highschool who already had their licences. I told myself if Ferris Rafauli could learn to drive, then so could I. (Don’t feel bad for Ferris, guys. I just googled him, and—holy shit—he’s designing homes for Drake. Who’s the smarty-pants now?). The point is, seeing other people handling their MS, reminds me that I can too.
All of this sharing can have the effect of chilling us out. Every now and then we all need to be told everything’s gonna be okay; and, nobody’s better qualified to testify than someone who’s actually limped a mile in your safety shoes or slept on a plastic sheet.
Are you good? Do you have your MS shit together? Then you’ve got an opportunity to be there for someone else. You don’t have to be an expert with lots of tips and advice. Being able to say “I see you. I know you’re not drunk; but if you wanna be, I’m here for that too”, can be a lifeline to someone else with MS.
When we see others advocating for themselves or demanding better treatment or care, it encourages us to do the same. Your MS tribe is about surrounding yourself with the people who are like you, and the people who can help you become the ‘you’ you want to be.
The language around disability and disease is so often infused with calls to battle that it can be confusing to feel love for any part of ourselves that we associate with MS. Ultimately, my love for my real, and virtual, MS friends is a way of loving myself.
Okay, cool. But where do I find all these awesome friends with MS?
We’ve come a long way since 2001. I don’t miss trucker hats or my pencil-thin eye-brows, and it’s never been easier to find and connect with others who have experience with MS. The MS Healthline app is a great tool, because it goes one step further and matches you with those who are not only living with MS, but are of a similar age, or taking the same medication. Plus, there’s way more to the app than making friends, including some guided live chats, brought to you by some OG MS’ers like moi.
To join the chats, download MS Healthline on iPhone or android and make sure your notifications are turned on, so you know when chats are happening.
June 10th 4pm EST – Product Round-Up: I have yet to meet a crisis I couldn’t shop my way out of. Tune in for my recommendations on everything from where to get the new ‘It’ bag to who makes the best catheter.
June 17th 4pm EST – Let’s talk about how MS is reflected in social and traditional media.
June 24th 4pm EST – MS Can Mess With Your Mojo: Let’s talk about intimacy and MS.
See you in the chat room!