I tried not to make eye contact with her in the elevator while I pushed the button for the floor directly above us. I knew that it was bound to happen sooner or later, and I hoped that by not looking at her, she wouldn’t engage. But it did happen. It only happened just that once, but it was enough to make me feel about an inch tall.
“You’re so lazy!” she exclaimed. It was meant as a joke, but she wasn’t exactly known around the office for being timid or tactful. Joke or not, I immediately went on the defensive. She didn’t know I didn’t sleep well the night before. She didn’t know I could’ve (and would’ve) climbed the stairs, just one floor up, but I chose to conserve my waning energy instead.
“I have a disability,” I spat back, still avoiding eye contact.
And there it was. That was the first time I used that word when referring to myself.
Sure, I click the “I have a disability” box in the EOE section of job applications, but I’d never said it out loud until that moment.
I have a hard time relating to the “D-word,” but I was looking for a quick way to end the conversation.
But in looking for a way to escape the confrontation, I completely missed an opportunity for a real conversation, a chance to explain why I don’t look sick. I overlooked an opportunity to educate someone about my multiple sclerosis.
I chose to run.
These opportunities don’t present themselves nearly enough, and we need to take advantage of these precious few moments to shove this invisible illness into the spotlight.
This disease is nothing to be ashamed of or to hide behind. Yes, the woman’s comment was rude and stung a little bit, but partially because it forced me to admit something to myself that I didn’t want to.
I have a disability. And it’s an invisible one. For now.
I don’t look sick–both a blessing and a curse.
It’s now a permanent part of me. And I need to own it.
Sure, I run a blog centered around living with MS, and I fly my flag just as high on social media, but I also have the luxury of a screen to hide behind. No one gets to see the bad and the ugly. How can I realistically expect anyone to be able to relate or empathize or understand if I pretend everything is roses and rainbows all the time? I’m not invincible, and that’s okay.
When the time came for me to consider getting a parking placard, the decision didn’t come easy. I didn’t want the judgement. I didn’t want to feel like I have to explain myself. And I didn’t want to admit that it was time.
A parking placard won’t be the last tough realization I’ll need to have. But somehow, ever since then, I feel like a great weight has been lifted. I don’t feel like I’m hiding anymore, smiling and repeating again and again through gritted teeth: “I’m fine.”
A handicapped parking placard. Baby steps.
I am fine, though. Finally. I’m fine with this thing that is part of me. I’m fine with me.
And if the people around me truly care about me, they’ll be fine with me, too.
So. My name is Cat. And I have multiple sclerosis.
This article was authored by Cat Stappas and originally published on the National Multiple Sclerosis Society’s blog, MSConnection.org, on July 11, 2017.
3 thoughts on “Flying My Fatigue Flag”
Thanks for posting Cat. So true! This is just a part of us and not who we are as a whole. I too am part of that group that is taking baby steps and need to be reminded that when we share – we are also allowing others to gain some knowledge (even a tiny morsel) of what it’s like to have an invisible disease. For now, when days like that are on my doorstep, I usually laugh or just want to get as far away from the situation as possible. You don’t think at the time it’s happening-“let me think about my reaction to this action”. We’re more likely to think-“This woman has no clue” however, if we prepare for them, even if it hasn’t happened yet, then chances are we might (just might) be more inclined to stop, pause, take a deep breath and maybe share instead of running. Thanks for the reminder and helping me to think about slowing down more. Appreciate you and yours posts more than you know.
Cat – loved your article. You are braver than I am. I have trouble thinking of myself as disabled and wouldn’t have admitted it publicly.. Was it really a missed opportunity to explain our MS? How much could you explain about MS before the elevator got to her floor?
I too have MS and suffer from bad fatigue. I am on an exercise program through the University of Alabama at Birmingham. A clinical trial with the NMSS. My exercise coach says I am doing very well but not up to my expectations. I have got to keep walking more and swimming more.