Why I Hate the Word "Remission" When Used With MS
Having been around Multiple Sclerosis for most of my life, there are some terms that get bandied about that tend to rub me the wrong way. I’m not a fan of these words, because I feel that they are inaccurate and misleading not only to those with MS but to the population in general. One of these words is a term I’ve heard several times recently: remission.
But it’s in the name, right?
Like many people with MS, I was originally diagnosed with Relapsing-Remitting Multiple Sclerosis. As you probably know, this type of MS is characterized by periods of new or worsening symptoms. These periods are known as exacerbations or relapses. For many, particularly early on in the course of the disease, people end up returning to normal after a relapse is over.1,3
At least, they appear to be back to normal. That was usually the case for me in my first decade or so with the disease. I’d have a relapse, be out of commission for a while, fight it with steroids, then I’d be back to normal. Sometimes I’d even feel better than I did prior to the exacerbation. So early on, the term “remission” certainly seemed accurate to me.
Doesn’t remission mean gone?
The longer I lived with MS and the more relapses I had, I began to not completely be normal after an exacerbation. That became very frustrating to me. After all, I thought the whole point of this form of MS was that I’d have problems but then return to normal. Wasn’t that what they meant by remitting? After all, I’d known plenty of people who suffered from cancer and they were in “remission” and were no longer having any issues. They were even able to stop their treatment. Not only was I never able to stop my treatment, but I was also no longer recovering fully from relapses. It sure didn’t feel like my disease was in remission, even though my relapse was over.
The sad truth about Relapsing-Remitting MS is that just because a relapse is over, that doesn’t mean the disease is gone or that there isn’t permanent damage. Sometimes you can recover your functions and look like you have no lasting issues, but an MRI may tell a different story and indicate a new lesion and damage from the relapse. Perhaps the disease activity is reduced at the end of a relapse, but that lesion is still there. That myelin is still damaged.1,2
Why I hate the word remission
When it comes to cancer, you can have partial remission, but I think most people think of the “complete” version when they hear the word. I know I do. Generally, it means that signs of cancer have been reduced or eliminated to the point that they no longer need treatment. That really isn’t the case with MS. Disease activity may decrease and your functionality may return, but the disease doesn't go away. This is a big deal to me because that damage from relapses can add up over time. More relapses can mean more damage, with the potential to eventually impact abilities permanently.1
I am disabled today and that end result started with those first relapses, ones that I seemingly recovered completely from at the time. In my opinion, the word “remission” gives a false impression that can negatively impact how people treat relapses and treatment. It takes away from the true nature of the disease: that it doesn’t really go away. The word remission can give a false sense of security that can impact how people treat their disease, which in turn can impact their future prognosis and level of disability.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Devin
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