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