The Invisibly Ill Are All Around Us

Going to the movies is something I very much dislike and avoid at all costs: it is an extremely uncomfortable time for me, filled with the potential pitfalls of sensory overload, temperature issues, and numerous other problems because of my various MS symptoms.  I do, however, force myself to get out there whenever a new Star Wars movie comes out.  The stress of going to the movies isn’t really the point of this article though. Rather, I wish to talk about another experience, and highlight, how even those that should know can’t always get past the invisible nature of an illness like Multiple Sclerosis.  This is a story, of how, even someone who has been around MS for years, can still fall victim to the invisible nature of our disease.

That girl is me

After getting to our seats with a friend of mine, I noticed a girl stumble as she was going up the steps (steps, in the dark, another reason why I hate the movies).  She ended up sitting in the row behind us, but the way she stumbled gave me a little pause. Not long after getting seated, she got up, seemingly urgently, and ended up bumping against my buddy’s seat as she tried to exit the row.  My friend gave me a somewhat annoyed look and mumbled something like, “oh come on” under their breath. Which, I get it, I’ve probably done something similar to others in the past. I’m sure it seemed like this girl, on the younger side, seemingly didn’t care about those around her, or had maybe even had a few drinks before the movie.  I couldn’t help but think though, that that girl is me, much of the time. I’m not saying she had MS, but I wouldn’t be surprised if I learned that she did. Like me, she looked fine, however, the way she stumbled, the urgency she had with getting up right after sitting down, sure those could be other things, but as someone who lives like that, it felt different. I saw myself as that girl (I even stumbled and nearly fell on the very same steps).

Tricked by appearances

The friend that attended with me is a longtime one.  Someone who’s been around me when I’ve had some of my worst MS moments.  I don’t bring this up to put my friend on blast, but to simply highlight that even the most knowledgeable and compassionate of people (and this person is both of those) can be tricked by appearances.  Even a person that is exceptionally experienced with those who fight “invisible” illnesses, like Multiple Sclerosis, can easily forget that something may not be as it seems. Honestly, I’m sure, had it been a different day, I might have reacted the same way as my friend did.  Had the girl not stumbled right in front of me, I likely wouldn’t have noticed or thought differently. If someone who is around or even has an “invisible” illness can so easily forget, can so easily lose compassion because of appearances, you can imagine how hard it is to be among those that don’t understand or have little knowledge about the disease.

Raising awareness

I don’t have a lot to say here, but I wanted to bring up this story in hopes of raising awareness.  Not only for people who don’t have the disease but even for those of us that do too. People who are chronically ill are everywhere, they aren’t just in their homes or hospitals, sometimes they are right next to you at the movies and you don’t even realize it.  Actually, you probably never realize it, that’s why we call it invisible. I hope sharing this small experience will remind folks, with and without the disease, to have a little compassion for those around us. To remember that someone may not be trying to annoy you, their body may simply be failing them in some small way at that moment.  You never know what other people are going through, no matter how they look or sound.

Thanks for reading!

Devin

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Comments

View Comments (8)
  • Azjackie
    3 months ago

    I wish I could be incognito like I used to be.

    I went to Home Depot to get some Mums. I parked in my discrete area on the side by the garden center so I wouldn’t have to cross the “speedway” at the front of the building. Thankfully a cart was there. I leaned on the cart as I do my rollater slowly making my way.

    Of course I was bombarded with staff “can I help you” the very moment I enter the security gate. I respond “I’m looking for Mums”. Luckily they were close. I make my selection and make my way to the checkout.

    Then it happens. My star persona blown. A mature salesperson loudly asks me about my MS loudly. I felt like I was outed in a scene of the movie Body Snatchers.

    Totally deflated I respond “yes I have MS”, all other shoppers treat me as if I have contagious leprosy, I checkout and retreat to the safety of my vehicle at my record speed of 1/2mph.

    Illness for me was like a scarlet A on a blouse.

  • Devin Garlit moderator author
    3 months ago

    Thank you for sharing Azjackie, that is certainly the other side of the coin to invisible symptoms and as you know, it’s not very pleasant either.

  • DeniseC
    3 months ago

    I wish I had made my disease visible for those around me many years ago. After many years invisible I now am visible. I have a walker. I cant even walk safely on a walking stick. Unbelievable that this has been liberating!

    I find that people look out for the bird with the broken wing. In hindsight I wish I had always taken a walking stick to let people know. I have found the kindness of people; doors being opened, chairs being pulled in, people letting you know that they see you without saying a word. I think that having the invisible visible helps those around us be the best that they can be.

  • Devin Garlit moderator author
    3 months ago

    Thank you DeniseC, very much appreciate you taking the time to chime in!

  • DeniseC
    3 months ago

    I wish I had made my disease visible for those around me many years ago. After many years invisible I now am visible. I have a walker. I cant even walk safely on a walking stick. It has been liberating!

    I find that people look out for the bird with the broken wing. In hindsight I wish I had always taken a walking stick to let people know. I have found the kindness of people; doors being opened, chairs being pulled in, people letting you know that they see you without saying a word. I think that having the invisible visible helps those around us be the best that they can be.

  • Alina Ahsan moderator
    3 months ago

    DeniseC, your comment reminded me of an article by another MultipleSclerosis.net contributor, Steve, who wrote about the changes that he felt after his MS became “visible” to strangers. I wanted to share it with you in case you found it relatable! https://multiplesclerosis.net/living-with-ms/visible-man/ Thanks so much for commenting here. I’m glad that you have experienced kindness from others in response to your more visible symptoms.
    -Alina, MultipleSclerosis.net Team Member

  • Nancy W
    4 months ago

    For me, I need to give myself a break when I am stopped because of my MS that is invisible. Yesterday, I was with some friends who are older than me but in pretty good health for being in their 70s. They were talking about going to different stores for different items because of price or selection. I don’t do that. I will pay more in the small grocery store because I can manage better than the large one. I started thinking I ‘should’ shop around and save money. But, what I save in money I would lose in energy and effort it would take to do that.

  • Alina Ahsan moderator
    3 months ago

    Hi Nancy, what a great point! It’s always a trade-off, and saving a bit of money might not be worth the hassle of making multiple trips or dealing with crowds and sensory overload in larger stores. I’m sure so many in the community can relate to this! Thanks for sharing,
    -Alina, MultipleSclerosis.net Team Member

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