Remitting. Who are you kidding?

At the last appointment with the MS neurologist, he said, “We need to take out the word, ‘remitting’.” Hoorah. Let’s work on that. Those of us with relapsing remitting multiple sclerosis (RRMS) know only too well that ‘remitting’ is NOT the same as ‘remission.’

Remission by definition means a diminution of the seriousness or intensity of a disease which, at the very least, means you should feel better. Not for many of us with RRMS. The damage that’s been done isn’t reversed because we aren’t actively flaring.

I don’t always walk straight. Sometimes I slur my words, or join words (making wonderful new words in the process). I’m heat intolerant. My gait is always uneven; when tired I have a pronounced limp. Multitasking is beyond me always. Cog-fog can happen at any time, especially in times of stress. My legs are often weak. I get fumble-fingers and glove-hand (you know, when your hands feel like you’re wearing a pair of leather work gloves that are two sizes too big and not broken in.) Bladder and bowel issues – don’t get me started! When I was working, I would often get asked, “When will you be in remission?” My reply, “This is it. This is me ‘remitting,’ or not actively flaring.”

The U.S. commercial for Tecfidera doesn’t use the word ‘remitting,’ it uses ‘relapsing multiple sclerosis.’ This is a good step forward when pharmaceuticals publicly remove a misnomer in a disease name. Unfortunately, that’s the only good thing about it. This advertisement shows a woman (presumably with relapsing multiple sclerosis) transitioning fluidly between hiking in the woods, swimming in a pool and attending an amusement park. Uh. Wait a minute. I’ve been taking Tecfidera for over two years and can’t transition quickly between things, fluidly or otherwise. I’m happy there’s been no significant progression of my MS while on Tecfidera, but it can’t undo the damage that’s been done. To my knowledge, nothing can – yet.

So I decided: I’m no longer going to explain to (mostly well-intentioned people) why I’m not ‘in remission,’ and why, if I’m taking Tecfidera, I can’t hike, swim and be in a loud, noisy crowd. I have relapsing MS. This is more freeing than I thought. By removing the word, it removes other’s from judging me based on what they think ‘remitting’ is. In turn, I’m removing the pressure on myself to ‘be in remission,’ to be like I was pre-MS when I’m not relapsing.

I have relapsing MS. I can still do a lot of things. Some things I have to do different. Some things I can no longer do. But this is me. And I’m doing marvelously, even if I do say so myself.

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