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31 Days of MS: MS Is a Label

31 Days of MS: MS Is a Label
4.4
(31)
Photos courtesy of Sophie Brodie

Day 2 of 31

This is Sophie Brodie’s story:

MS is a label.

Sometimes that label means something, but a lot of time it doesn’t. Almost two years ago — when I had lost some vision, some sensation, some balance, some mobility — a label was all that I wanted so that I could stop living in uncertainty.

The label doesn’t afford many advantages. From my lowest point, I got better and yet the label insinuates things about me that simply aren’t true. I can see, walk, talk, drive. I can live.

Sometimes I think the label might look after me in hard times. But then I had to register myself with student disability services, didn’t get told to shield from the virus, haven’t been prioritized for a vaccine, despite the fact that I might be more vulnerable.

Other people with labels get it. Other people with labels ask you if you’d like to edit their podcast. They let you moderate their Twitter account. They make it a bit easier. Other people with labels make the label worth it.

The rest of the world just sees a label and thinks “Problems!” And they don’t mean to. But the MS label is for the symptoms, and so people start to view you as your symptoms.

I’m differently labeled, not differently abled. You can see that in my actions. I’ve regained all the abilities that I lost for those few months in 2019. Right now, I can live my life like any other 22-year-old if I want to. I play musical instruments, I read books, I write and type essays and lesson plans like I’m running out of time, I do yoga, I volunteer, I campaign, I make waves in lots of different ways.

Actions speak louder than words. Labels are limiting and have no regard for intersectionality. There will be people that see your label and instead of reading, “This person faces worries that I don’t,” they will read, “This person is different.”

So instead of being different because of your labels, be different because of your actions. Dedicate yourself to something — sport, professional development, a political cause, a social issue. Act so that your label becomes an “and,” instead of a “despite.” Screw labels.

Multiple Sclerosis News Today’s 31 Days of MS campaign will publish one story per day for Multiple Sclerosis Awareness Month in March. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofMS, or go here to see the full series.

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3 comments

  1. Shon says:

    Four years in and I am finally tired of having MS. In the beginning, the only thing that mattered was that no one could look at me and tell I had it. I can tell. I may wear it well, but I’m exhausted. MS drugs are not an option for me. I took the long, hard road, but I’m grateful to be alive.

  2. Susan says:

    Four years ago, I woke up one morning completely blind in my right eye and was diagnosed with optic neuritis, a common first symptom of MS, as we all know. Sharp nerve pain in my extremities, unsteadiness on my feet, fatigue and brain fog followed. A series of MRIs revealed a large number of lesions on my brain and spine. Yet the lumbar puncture did not yield the definitive result my neurologist wanted in order to put that “label” on me. A total of three physicians told me at that time that they firmly believed I have MS but could not put it on paper yet ?!! Years later, many of the symptoms have worsened and I now have new ones such as the dreaded incontinence issues. Yet without that “label”, I can’t even get any accommodations at my job that could make things a little easier for me. I know MS can be a very difficult disease to diagnose but I’m 58 years old with an “unlabeled” illness that I can tell is progressing, and yet I feel no one cares.

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