I get a bit of joy out of watching people discover I have Multiple Sclerosis.
It’s not because I like the attention or the (mostly well-intentioned) pity. It’s definitely not because I enjoy having MS.
It’s because their genuine surprise reminds me of how much I am able to hide my disease. The advantage of this is obvious; I experience less overt discrimination or bias than many others with serious illness and disability do. I can pass for what society sees as normal and healthy. The disadvantage is that when I’m sick it is almost always invisible to the naked eye, which is hard for some people to understand.
Everyone’s MS is different. Even the same symptom or flare affects each of us uniquely.
My MS is forgetting things or seeming disengaged when my cognitive symptoms are flaring. It’s looking flaky when I am canceling plans because I’m experiencing a wave of fatigue. It’s avoiding a full meal because my vertigo causes unending nausea.
When I have the occasional flare that requires the use of my crutches or makes me otherwise obviously sick, certain things become easier.
It’s easier to explain to my friends why I need them to pick a new place for dinner because I can’t handle the stairs. It’s easier to tell my job that I need to work from home because sitting in my chair all day is just not going to happen. It’s easier to justify getting a loaner wheelchair or scooter when I will be on my feet and know that I won’t have the stamina otherwise.
But I’m lucky because that’s not most days. I can hide my symptoms with a smile or laughter. I keep busy and find ways to compensate when something gets in the way. And, begrudgingly, I accept that there are some things I can’t do at all. Most days, unless you are accustomed to the smallest changes in me, you would never know if my MS is active or not.
That’s what my disease looks like. It looks like most days. It looks like the me you know and, sometimes, the me you don’t. It looks like the scars no one will ever see and the pain no one will ever feel.
And that’s Multiple Sclerosis.