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Can I Still Be an MS Advocate If I Rarely Relapse?

Reading time | 5 mins

When you’re living with a chronic illness, you expect it to be well... chronic. As in, continuous and long lasting. Something that pops up from time to time if you’re lucky, or something that’s always active if you’re not.

I have relapsing-remitting MS, which as the name implies, means that it’s a type of MS where symptoms flare and go into remission periodically. Unfortunately, there is no handbook that can tell you what to expect — how frequently you’ll relapse, how long your remission will last, and what this disease looks like from person to person and even day to day. It’s like the worst waiting game ever.

The “first” relapse

“What were the symptoms of your first relapse?”

This statement is a bit of an oxymoron, since normally a “relapse” implies that something has happened before, but this was also used to describe my first experience of symptoms back when I was diagnosed . “Your first relapse.”

I remember it vividly because I’ve told the story so many times to my friends, family members, doctors, and the internet. I remember those first symptoms, I remember the diagnosis process and I remember the treatment. I don’t remember how long it took me to get back to “normal,” partially because I’m not sure I ever was completely normal again, but also because no one really asks about that part.

Remit

I was in remission for 7 months after my first relapse. During that time, I graduated, got a job, and tried really hard to understand what my life would be like after this diagnosis. At the time it was all really abstract and unclear. As it turns out, “everyone is different” is really just a way to say, “We have no way to predict how this is going to go for you.”

Relapse: 7 months later

“Why can’t I catch a break?”

I relapsed right before my sister’s wedding. I completely lost the vision in my right eye due to optic neuritis. I had already been fitted for my dress and after the medications I took to manage that relapse, the dress didn’t fit anymore. I had changed neurologists three times at this point and was stressed out about picking the right medications and adhering to them. By then, I had started to make connections and friends in the MS community and it was especially helpful to have that community a resources for tips and advice. My optic neuritis lasted a few weeks, and then flared up again the morning after the wedding.

Remit

“When will the next one be?”

As time passed, I started to feel like I was a part of something bigger. I started a blog, mostly as a “brain dump” to help process my feelings and, luckily, it resonated with other people. Then I became an MS advocate, which as it turns out, has changed my life. I felt empowered after these two relapses, and felt prepared to take on the next one whenever it would hit. I was armed with the knowledge and support I needed to get through whatever MS was going to throw my way, and tried to educate others on how to do the same.

And then I waited.

Relapse: 4 years later

“Could this get any worse?”

Four years later after my last relapse, optic neuritis hit again — this time right before I was scheduled to have a really important surgery. The medications I had to take lowered the integrity of my tissue and risked cancellation of the surgery. I went straight to my community for support, and their virtual hugs and words of encouragement got me through it.

Remit

“Am I sick enough to be an advocate?”

Before that relapse, I started to question whether or not I really had MS because I’d had so few relapses. Maybe all the doctors were wrong; my story didn’t seem to line up with anyone else I knew living with MS. I felt like a fake advocate at times because I wasn’t suffering from MS, and couldn’t relate to those who were relapsing frequently or having daily struggles. Over time I started to feel a little disconnected from my community simply because I wasn’t “sick enough” compared to others. I started to distance myself a bit. I was still a vocal advocate for those with MS, but I didn’t feel fully immersed in that world.

Relapse: 7 years later

“Do I take my health for granted?”

It was nearly a decade before I relapsed again. In that time, it’s almost like I forgot I had MS. Not that MS is something you can forget, but without daily complications or relapses it almost reverted to being a distant memory. The fear of another relapse or worries over how MS would affect my life used to consume my thoughts on a daily basis. But after so many years without any real symptoms, MS sort of got put on the back burner, so to speak. Not entirely out of sight, but not top of mind, either.

This relapse came in the form of optic neuritis again but it hit me much harder than the last bouts, and specifically impacted my mental health in ways other relapses hadn’t. I felt paralyzed by it. I was angry about having MS all over again, and even slipped back into a little of the “this isn’t fair” line of thinking I was in when I was first diagnosed. I’d been so lucky for so long and because of my luck, I was more resentful when I did relapse again. The truth is, it put my entire life into much-needed perspective. I immediately turned back to my community for support and advice. The tiny voice in my head that said I didn’t have MS was gone. The four instances of optic neuritis made it pretty clear that I do, in fact, have MS and that even the most veteran of patients can be stuck in denial.

Remit

“Am I practicing gratitude every day?”

I’m embarrassed to say it, but relapsing again made me feel like I got my street cred back within my MS community. I’d gone so long without relapsing, that even I had questioned my own diagnosis. But I took this relapse to heart; I’ve changed many things in my life after this slap-in-the-face reminder that I am sick, and my current level of physical ability is a gift that won’t last forever. I feel more connected to my community because I have memories that are relevant to share and I am reenergised to continue advocating for myself and others with MS. It’s almost like I needed a gratitude tune-up — and I definitely got one. I feel conflicted between hoping that I can go so long without a relapse again that I don’t remember what it’s like to have MS, and realising I need to keep my gratitude front and center, every day, because chronic illness hits when we aren’t expecting it — and even when we are.

UK/MED/18/0350 January 2019