Just Because We Aren’t Relapsing Doesn’t Mean We Are Symptom-free

Beth Ullah avatar

by Beth Ullah |

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In relapsing-remitting MS, relapses and exacerbations involve a worsening of symptoms or the appearance of new ones for 24 hours or more. My disease baseline has changed many times over the years, but has never returned to how it was before my symptoms began.

I’m intrigued by how people use phrases differently to reflect on their realities. Last night, I was absentmindedly scrolling through social media and a friend’s post caught my eye. The post marked the anniversary of her treatment with Lemtrada (alemtuzumab), and she celebrated its continued success.

The caption caught my eye: “Although I feel like I’m in a constant flare-up, I’m relapse-free.”

I thought this was an interesting way to phrase it. I often refer to my current situation as my “new normal” or my baseline. That got me thinking about how the things we say are perceived by others who don’t necessarily know much about MS and the impact it has on our daily lives. For instance, some may assume that “relapse-free” means “symptom-free,” but that isn’t necessarily the case.

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I think this applies to invisible symptoms more than the visible ones. On good days, which don’t happen as often as I’d like, I can walk across a room without my walking stick, and without spasticity and spasms. It might seem like there is nothing wrong with me, but this couldn’t be further from the truth.

Of course, I can only talk about my reality and my experiences. But I also like to reflect on other people’s realities. I think the reason I haven’t personally encountered many of these assumptions about invisible illness is because MS has left me frequently needing mobility aids, such as my walking stick, a wheelchair, and a scooter. So it’s clear to onlookers that there is something “wrong.” However, for those whose symptoms are invisible, such as sensory changes, pain, or optic neuritis, to name a few, the assumption by others that they’re “fine” can be quite stressful.

Thinking back to the brief period when my symptoms were invisible — before I had a paralyzing relapse — I found it to be extremely frustrating. I had to explain certain things to family, friends, and colleagues, such as why I missed a street sign due to optic neuritis. Another time, I served my dad moldy toast because I simply couldn’t see it.

I think it’s important to recognize that just because someone isn’t showing visible symptoms of MS doesn’t mean they aren’t experiencing them.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Gretchen Gehring avatar

Gretchen Gehring

When my daughter was in her early years of MS, she was walking but unsteady. People stared at her and whispered, assuming she was drunk. Painful.

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Tom Anderson avatar

Tom Anderson

As a former psychologist, I have always been interested in denial, and more so now. We learn early in life that we can make or learn stories to minimize our fears of serious things to come. I find MS social online media to be full of this behavior. Things come along and are eventually regarded as fact, but they are just stories (otherwise called anecdotal). But one “not a story” that has been around for a long time is the one called “Oh, you look so good” (kind of what you are referring to, I think). I believe MSr’s have more to fear from their own stories when not factually based. But moving to the outside, the stories of others can be damning as well. They were for me. But one has to try and manage other’s perceptions with this, which is very hard to do. So be aware of what you communicate, it may come back to bite you!

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Brian avatar

Brian

I agree! I’ve not had an obvious attack, just a gradual decline in the routine things I used to be able to do, over the 19 yrs. since I was diagnosed. Great read! Thanks

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