Flying My Fatigue Flag

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.
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Cat

Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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    20 Comments

  • Gerri Ballas   Jul 11, 2017 11:06 AM
    Dear Cat, I appreciate your honesty and openness about your MS experiences. Yes, it can be tough mentally and emotionally and often not easy to admit to ones self. I found that mentally one must pursue a positive outlook and say "I will do it, I can do it." With that attitude I was able to overcome and just be myself. I could admit to everyone that MS was a part of me and that yes, I am disabled to an extent, but still able to do. So being positive is very helpful and having support of friends and family a must in order to survive this disease. Also, if you believe in God, He is a healer and prayer helps enormously, at least, in my case. I let go and give to God.
  • Irene Goetze   Jul 11, 2017 11:31 AM
    Diagnosed at age 66, I did not have to deal with the MS stereotypes when I was working. My biggest problems were balance and leg pain. Once diagnosed, I agonized about using a cane, then a walker and a scooter. To compensate, I got cane's to match outfits, found a plaid walker, and rationalize that the scooter makes it easier for others since I move faster and need less help.

    With each advancing year, I worry less about what others think and more about what is best for me. I teach a Tai Chi class seated and my students do Tai Chi standing. I used to mind, now I am happy people come to class.

    Most people are understanding and supportive. I like to think that the people I worked with would have been great.
  • Jeanetta in   Jul 11, 2017 2:16 PM
    After sitting in traffic for two hours it took me 45 minutes to walk half a block. My neurologist told me I needed to get over myself and get a parking placard. People love to ride with me as parking is much easier! Conserving energy for the important things helps.
  • Susan Lesperance   Jul 11, 2017 4:24 PM
    Cat, thank you for educating us about your MS journey by sharing your good, bad and ugly experiences. This blog post is a good reminder to us to share a smile and a kind word rather than making a remark that can hurt and cause pain to its recipient. You are strong, you are brave...you are remarkable. Sending love...Susan
  • Samantha Smith   Jul 11, 2017 5:35 PM
    Cat,

    I was diagnosed in 2006 and had no idea I Had MS. It was a simple MRI of my brain for a growth on my pituitary gland. In 1999 I had my first MRI and was put on medication for a small growth in My Pituitary gland. After 2 MRI every year I decided in 2004 that I was fine and I didn't need any MRI as I was on medicine. In 2006 my Dr told me that unless I had a MRI he wasn't going to give me the medicine. So I had the MRI and never found out about the growth as the Doc found 12 lesions in my brain. He said it's either mini strokes or MS. I told him mini strokes run in my family and I was positive it was that. So to make sure he did a spinal tap. On Christmas Eve he wanted me to go to his office and give me the results. I told him just tell me what it is and I'll be fine. He asked me if there was someone with me and I said I was alone and that what ever the results I'll be fine. Well he told me I had MS. I said that's impossible I can walk, I can't possibly have MS. Well that was 11 years ago. Even now I look great but the lesions, fatigue, all those invisible signs started to take over my brain. People think I'm lazy and not listening when I am trying my best not to screw up. Well I totally understand what your going thru. Nobody in my life believes me and they think I'm just making it up. I have very few people in my life and the only ones who truly understand are people like you who have this invisible disease. I have 2 lesions on my emotions and 1 large one on my short term memory. The Dr. won't tell me where the other 9 are but one by one I have been finding out. I use to think I was lucky that I could walk and now my ability to speak like I use to is gone. I was smart and I had a quick wit. Now sometimes I feel like a nit wik. I feel stupid when I use to be be so well spoken. When I read your story I had to write you. I understand totally what your going through. It sucks but I have learned that I have to accept what's happening to me cause no one understands except you and the others who suffer from the invisible part.
    Today I have to keep a promise frame of mind but depression rears its ugly head and I just want to sleep. Thank you Cat for posting this. I understand and at least you and I are no longer alone. We get it and that's all that matters! Peace my friend, Samantha
  • Nicole Moore   Jul 11, 2017 5:45 PM
    This hit home today...Today I will raise my flag but only half way. I still have a lot of fight in me.
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    SmartyPants  Jul 12, 2017 12:20 AM
    I was touched by your honesty, yes MS can be invisible and people can be insensitive, and it can even be someone in your family or circle of friends.Be strong, store and reserve your sweet energy for when you will need it. The way I look at it is that every morning I get a bucket full of water and a ladle, and that I have 12 ladle's full of energy, and I can use it all up in the morning and then have to rest the rest of the day or I can use it a little at a time throughout the day and make it last through the day. Either way, learning your limitations is what I had to learn, and how to ask for help. Stay the course, I'll be following your blog and keeping an eye on you.
    SmartyPants
  • Cathy Jacobson   Jul 12, 2017 10:17 AM
    I too have MS.. and a lot of other things too.. but MS was one of the first. The Disability Placard.. yes.. big step.. eyes giving the," you don't look sick" look.. but sometimes I look sick.. and we all know, in unseen ways, that we are sick.. we just try very hard to not look it, in our physical stance, but it takes a toll on us mentally.. so yes, the placard is the first step, but it is such a hard step.. I commend you on taking that step..
  • Dan Hendricks   Jul 12, 2017 10:56 AM
    It's funny sometimes I wish that my MS was a bit more invisable. I walk but its very difficult to not show signs of disability with my gait as it feels like my right leg weighs about 400lbs at times. For a long time I didn't want to have the "MS" discussion and so when people would ask I would talk about old sports injuries. Once I started to own it and simply tell people that "I have MS" it has been wonderfully freeing. I'm still kinda mad at myself for some of the things that I missed out on because I was too proud or bullheaded to just use a scooter to help me get around. Now with my little go-go scooter I can travel and go places and be able to keep up with my wife and kids and not miss out on so much because I couldn't keep up, I still walk as much as I can but when I'm going for a long time I've learned that a fall is far more disheartening than a cane or scooter.
  • des  Jul 12, 2017 11:21 AM
    Thanks Cat, I really find I need support now from people who understand. I got the handicap placard which was a very wise thing for me to do. Because I use a cane, that part is not hard since it's something people can see. Been thinking seriously about different kind of cane or even scooter now, especially to make it easier for people who are with me not to have to wait since I am so slow. I still hate and always have hated asking for help. I feel like such a useless piece of crap because of that. Hopefully, I will get over myself soon.
  • Janet_S  Jul 13, 2017 7:40 AM
    Cat,
    I so get all of this. I finally admitted to my boss I have MS, but she has no idea what that is. I played it down, like it was nothing. I did ask for my office to be moved to the first floor (only stairs can get me to the second floor), and she is working on getting that done, thankfully. But no one else knows. My husband sees the pain on my face as I sometimes, really sometimes struggle to walk. People don't get it. I feel great at times, then totally disabled at other times. Thanks for letting me share. I am not ready for the "out loud" I have MS, and it's been 9 years.
    Janet
  • Jeremy Tamburo   Jul 14, 2017 8:32 AM
    I was diagnosed with MS in 2011 at the age of 32. Naturally lean, I stand 5'10" tall and weigh 125 lbs. and I use a cane to assist my mobility. I didn't get a handicapped placard for my vehicle because I know non-handicapped people that have obtained placards and used them fraudulently, so I got a handicapped license plate instead.

    Once I was accosted by someone in a parking lot who accused me of "...using your grand parents' car and cane to park in a handicapped space because you're lazy."

    My response: "My last grandparent died in 2009, on my birthday," which is true, and continued, "this is *my* vehicle, and despite my appearance I *am* handicapped. If you would like to accuse me of fraud, I'll gladly show you my vehicle's title...in front of the police. Would you like to call parking enforcement, or should I? While we wait for the officer to arrive and verify my claim, I'll explain my condition to you in detail. I have the time, so...shall we?"

    A smile, a gentle tone of voice and a steady, unwavering gaze seems to convince the doubters.
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    Hardtimez95  Jul 19, 2017 12:20 PM
    You are strong! I was diagnosed 95 and I have never admitted to having MS until my relapse last year. But I totally understand the conserve your energy part of life. It's very important to us. They look at us and assume we're fine, but they just don't understand. We have MS! Just want to say keep pushing! Humble, positive, pray!💪❤
  • Betsy   Jul 23, 2017 11:18 AM
    I have dealt with my MS alone for 40 years, mostly my choice. After reading your blog I don't feel alone anymore. Thank you.
  • Larry R.   Jul 25, 2017 2:37 PM
    Fatigue, that word early in the MS game, was never considered because, well, fatigue came alongside advancing age, right? I guess I was advancing in age fairly quickly, albeit prematurely that premonitioned something more sinister to come.
    Fast forward several years fatigue became part of life's vocabulary 24/7 with the usual complaints at end of day when symptoms are at their worst. Somewhere I started to suddenly fall down without explanation but with careful review of events it became clear physical activity resulted in fatigue yielding to falling down episodes. The problem worsened with implantation of the Intrathecal Baclofen pump there seemed to be strong evidence there existed a rival relationship between the two.
    At that time proof of that relationship had not been empirically established albeit a inconclusive algorithm, the mystery of MS continued without answers. Nothing new there.
    Later, it was observed physical activity with any effort was a precursor to spasms and falling down. Fatigue morphed into energy depletion, and depletion mandated energy conservation.
    My therapist recommended I exert myself no more than 1/2 hour per day. Of course, being a former Marine I ignored her advice at mine own peril continuing to have crashing episodes until one afternoon I had pushed the limits too far finding myself shortly thereafter immobile in my chair unable to lift a finger. I went from fatigue to exhaustion to "paralysis" in one fell swoop. Not good.
    My wife monitors me closely and when I run the clock out at 1/2 hour she simply pulls the plug on my activity.
    Fatigue is real and invisible. Will others "see" you as lazy? Probably. If you were like me you'd ignite your anger mechanism to prove them otherwise only to crash and burn later fueled by foolishness. Fatigue is your baby; handle it gently and responsibly.
  • carrie power   Aug 1, 2017 3:56 PM
    Be true to yourself, only you know your abilities. I have been diagnosed for 24 years now, I take the elevator, I use the handicapped stall in the restroom...I don't look disabled, if you don't know me, you don't know what to look for!
  • Judy Erickson   Aug 1, 2017 10:33 PM
    This is so me. Look healthy on the outside, if they could only see and feel whats going on inside.
  • Meesh Davis   Aug 3, 2017 12:06 AM
    Cat,
    All I can say after reading your entry is WOW! How inspiring! I mean I can't relate to it, but I I so many of us living with MS can. I was dianosed with this "invisible disease" when I was just a child at the age of 9...so I've been living with it for bascically my whole life! But when I was in school kids would always say things behind my back & snicker...but now at the age of 27 I think about it & I'm like look how far I made it!
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    mc1john  Aug 19, 2017 9:10 AM
    Hi Cat, I sure do know what you went through. I do understand saying I'm disabled is hard thing to say. One thing I have now learned is to accept what I have and live with it to fight for cure. So now when people come up to me and say rude things or act like they're joking. I just tell them, no I live with MS and so how are you doing. Most of the time it keeps them speechless
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    JGelabert  Sep 2, 2017 4:50 PM
    Thank you Cat. I take a nap when I get home from the gym. May seem silly but its my way of flying my white flag. I can't do it all but I can still do some.