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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Comments

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  • Kellie F.
    3 years ago

    While watching TV one night, my 6 year old daughter saw the Tecfidera commercial. The words “Multiple Sclerosis” peaked her attention. Both my children, ages 6 & 12 know I have MS. They know this disease is the cause of my fatigue, pain, forgetfulness and the reason I sometimes miss out on outings. After my little Abbie aaw this commercial, my heart ached for my daughter as she turned to me and said: “Mommy, maybe if you take that medicine you could do more things with us like that lady does!” Not only are these commercials misleading to friends and family…but puts false hope in our young children’s mind. Young children only see this healthy vibrant woman that probably doesn’t have MS to start with. In their minds, they believe if mommy or daddy takes “X” medicine they would be a normal healthy parent just like that lady on TV. I had to explain to Abbie that the lady in the commercial, if she did have MS to start with, probably started the medication before her body had been damaged by the disease and the medication doesn’t “fix” MS or your body, the medication “may or may not” prevent the disease from getting worse.
    I was on Gilenya for a few years and was part of the clinical trial. I chose to stop the medication when I had a broken arm and had to undergo surgery to have it repaired. My immune system was only slightly affected by Gilenya, but after nearly 1 1/2 years post surgery the bone still hadn’t healed, the bone graft didn’t take, I made my own decision to discontinue Gilenya in the hopes of my immune system would improve and heal the bone. On the upside, it is now 2 years post surgery, the bone is now healed…but because of the time it took to heal, the hardware has worked loose and is moving around causing much pain. Soon, I’ll undergo another surgery to remove the 12″ plate & 11 screws in the humerus bone in the top of my left arm. I am still off Gilenya and any other DMD. After I have healed from the upcoming surgery, I’ll explore all the options for a DMD and restart therapy.

  • Mare Dziadul
    3 years ago

    My best friend saw the commercial and said to me “not for anything, but were you ever able to be that active? Even prior to the MS diagnosis?” Not because I was inactive, but the girl in the commercial for Tecfidera is very active even for the able body. This commercial does not reflect the majority, but little of the minority. This drug company seems to want to fool the public with the realities of MS and capitalize on the financial aspects, giving a false picture. My opinion and wish that we all could live like that girl someday.

  • arbaldinger
    3 years ago

    Love this article! I was thinking the EXACT same thing when I saw that Tecfidera commercial. I am on Gilenya, but nevertheless, who are they kidding? The meds may hold the disease constant, but I am not going to be as spry as that girl in the commercial is!

  • Jewels
    3 years ago

    Marvelous!!!!! Well said! Each time I see that TECFIDERA commercial ( been on it for 3 years- last relapse 10/15) I think the same thing!

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