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There are things you learn fairly quickly after an MS diagnosis. For example, the word “fatigue” is utterly insufficient. Everything you thought you knew about your future suddenly feels uncertain. There’s no one “right” way to treat MS, and, in fact, you will quickly be tasked with overwhelming time-sensitive decisions about your care.   

When I was first diagnosed with MS I didn’t want to deal with any of it. I refused to talk to anyone even remotely associated with the disease. I ghosted my MS Clinic. I steered clear of on-line patient forums. I wanted to stick my head in the sand and hope it would all just go away. I was scared.

Of course, it’s normal to grieve after a life changing diagnosis and I’m pretty sure my resistance was also fairly typical. But self-isolation makes MS lonelier than it needs to be. After a few weeks, maybe months, when I was finally ready to process and confront my new reality, I started looking for the people who looked like me. I craved the connection, the hard-earned wisdom, and the loving support of others who understood what I was going through. I needed to find the people who could say, “Wait, THAT happened to you?? That happened TO ME TOO!”

The MS learning curve is steep, but you don’t have to figure it out alone.

Finding Your Krew

I was 23 when I was diagnosed with MS, and I had plenty of questions that felt awkward or even inappropriate to ask my neurologist. Questions like, what should I tell my boss, how do I handle dating? Should I have babies? Are all my friends going to abandon me? Can I still travel? WHY AM I PEEING SO MUCH? 

Okay, that last question was definitely one for my doctor. But my first MS friends were three other 20-something girls I’d cobbled together through word of mouth who turned out to be the lifeline I needed. These were the young women I could have real conversations with about the impact MS would have on my sex-life, my career, my coworkers’ weird reactions. We met monthly in my apartment where we drank wine and gossiped and I started to feel like if these people who I respected and admired, who were cool and smart and fun, could handle MS, then maybe I could too.

Fast forward to years later, I’m now living with progressive MS. Sometimes I’m still the one asking questions, but decades of MS experience mean that I’m often the one with answers. If you want to know if your treatment is working you need to ask your doctor, but I can direct you to resources that might help get you started. If you wanna know how to cope on days when MS feels impossible, I’m here to remind you that you can do hard things. That you are not alone. 

Nowadays it’s easier than ever to find your people, even if you’re not quite ready to connect IRL. My Krew, for example, is a diverse community of Canadians living with MS. We share our stories, insights and experiences online, and for the first time ever we recently hosted a get-together where we met people with MS in person.

At MyRules.ca it’s the people living with MS asking medical experts the questions you might be thinking of yourself. You can watch short, powerful videos of our conversations about symptoms, treatment decisions, self-advocacy and progression. You can also find educational resources related to each conversation.

Speaking of MS Progression…

What we know about MS is constantly changing and evolving. We now understand that MS progression can happen independent of relapses. This means that your MRI may be stable, you’re not having any relapses, but somehow you suspect your symptoms are getting worse. For me, these changes first showed up when I was exhausted. My foot started kicking the ground towards the end of a long run. I would have to stop and sit on a street corner for a rest during a walk that used to be effortless. These were early signs of progression but even when changes were subtle they were too important to ignore. 

Of course, not every change means MS progression. Symptoms can fluctuate for reasons like changes in body temperature or underlying infections. (The first rule of interrogating new MS symptoms for me is usually: Wait, do I have a UTI?) Understanding progression matters because MS management isn’t a one-time conversation. Your symptoms, circumstances and priorities will change. The treatment goals that made sense at one stage of your life may need to be revisited later.

Take the MyRules Progression Quiz

If you’re not sure which symptoms deserve your attention, the Progression Quiz, available through MyRules.ca is a good place to start. The quiz asks simple Qs about your everyday life, to help determine whether subtle changes to your MS merit a discussion with your doctor.

You Are the Expert on Your Own Body

Doctors are experts in ways that I will never be. But people living with MS are experts in ways that doctors can’t be. If you’re worried about what’s going on with your MS, you deserve peace of mind.

Find your Krew. Ask questions. Stay open to new information.

For resources related to your MS, visit MyRules.ca and click to follow My Krew on Instagram and Facebook.