The Mask

Living with multiple sclerosis, I often feel like I’m wearing a mask.

A disguise of sorts for protection. But sometimes, it’s hard to tell whom I’m protecting more–myself or others around me.


Whether I’m with family, friends or even strangers, I don’t want to show the exhaustion, confusion or pain that is behind my (often) smiley exterior.

The smiles I present aren’t necessarily fake–I choose to live my life with joy and enthusiasm.

I don’t want my children to remember me wincing in pain, friends thinking about how tired I always looked or even my former co-workers reflecting that I just couldn’t handle the daily grind of the office.

Pride weighs heavily in this decision. It’s not so much “never let them see you sweat” as I just don’t want anyone to think, myself included, that MS is winning. My ultra-competitive nature has met its match with MS.

Each morning I’d ride the elevator up three floors back when I was working. It was a short ride, but in those final few moments before the elevator doors opened, I would lower my mask. 

Security footage, if it existed, would expose what MS really looked like as I let myself show signs of pain, apprehension and exhaustion.

It’s hard to focus on presentations and month-end reports or metrics when you are worried about another relapse, your next medical treatment or whether you’ll be able to feel your left hand tomorrow.

But the moments those doors opened, I was grinning from ear to ear and did my best to operate at 176 percent, all with a twinkle in my eye.

Even now post-career, I continue to wear my mask. It’s a 24-hours a day, 7-days a week effort.
I do yearn to take my mask off and feel free of MS.

Sometimes it happens when I’m not even expecting it.

The other week, I was enjoying a night with old friends. My buddy was telling a humorous story and while explaining it, he started stumbling over his words and, as a result, ended up using the word “superficious.”

We both started to grin, aware of his error, but he continued for a few more seconds before stopping. Then we looked at each other and just started laughing hysterically.

I’m not sure why it was so funny. Maybe it was how hard he tried to sell this non-existent word, or my nonchalant, head-nodding reaction, as if I totally understood what he was saying. It’s one of those jokes where you had to be there. But in that moment–as the two of us keeled over laughing so hard it hurt–I forgot I had MS.

The mask was lifted. I was free in that one special moment.

And that’s the primary reason I wear my mask. I know these moments exist, but if I’m too distracted by how hard life with MS is, I’ll miss out on them. I’ll fall into an emotional and mental abyss, where my thoughts are dominated by this disease.

I’m not alone in this struggle. I know others with MS or similar conditions also wear masks. I can see it during our interactions or even in their pictures on social media. We are acting out parts as we attempt to blend in with others.

Sometimes this disease pronounces itself in obvious ways. Some are unable to walk, see or even speak clearly. But for many, we suffer from “invisible” symptoms. You wouldn’t know we had MS unless we told you.

To the world, I look, walk and talk just like any other 40-year-old father of two.

I wear the mask because I hope to fit in. I want to survive. I don’t want to live in darkness.

But, in the cruel irony of MS, I need to wear my mask so I can experience the light.
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    11 Comments

  • Gerri Ballas   Jul 17, 2017 12:10 PM
    Dear Michael, MS is life changing for all of us who live with it. Best medicine is to be upfront and allow people in. Once they know what you are dealing with, they will be most considerate and helpful when needed. My world knows what I have and they see me struggle at times but they respect me and do not make me feel disabled because they are accepting. This is what you want. So take off the mask and be yourself.
  • AnyBeth   Jul 17, 2017 1:40 PM
    I find it awfully sad that you seem to think that, could you not hide your MS ("to fit in"), you would be doomed to despair. Disability is not death. While there is a period of adjustment to any major loss of function, we humans are marvelous at adapting -- so great at it that, a few years out, people who've acquired disabilities tend to report just as high "life satisfaction" as without. Heck, even during the initial grieving process, it's not all darkness (though perhaps a dark sense of humor helps).
    And it does no harm for onlookers to see disability. I tear up reading you say, "I don't want my children to remember me wincing in pain" because I understand it also means you don't want your children to have the chance of remembering you as you really are. That's so sad.
    We can't be free from MS. But we can be free /with/ MS. We can live openly, freely, proudly. We can find purpose and contentment with no need to hide. There's no need for putting the mask away to be an act of giving up -- no! it could be an act of being brave enough to dare get re-accustomed to living in your on skin, unfiltered. That must be hugely scary if you're used to living disguised -- even to yourself; how much more courageous the act would be, then.
    What a pity this even comes up! I have a 2y/o nephew. He learned it's normal for me to be all kinds of different ways, so he accepts me however I am and however I need to do things. There's even evidence he's generalized the notion to others. If we all saw people that way (ourselves included), how much better the world would be! I hope we all can become more like him this way.
  • Shannon   Jul 17, 2017 3:52 PM
    I MS and I struggle everyday. I have relapsing remitting MS. My parents were told by my kids principal to remove the kids from my home. I have zero support and my children and my parents don't even speak to me. I was a stay at home mom for 10 years when my marriage fell apart. I cry because I miss my kids. I've had three jobs since I had to go to work. I understand the mask because I have no one to help or confide in. My unemployment is due to run out and I'll literally have nothing. I know all about the mask, because I have to put it on everyday just to keep me from crying. My blessings to you all
  • smartypants196   Jul 18, 2017 12:39 AM
    Bless your heart. Loved your article. Keep on doing what you need to adjust and live with MS. Allow the angel of grace to visit you, she's a friend of mine
  • Teri   Jul 19, 2017 2:29 PM
    Yes....so well said..thank you
  • Betty Beem   Jul 20, 2017 7:24 AM
    If I recall my pre-MS days correctly (it's been a long time!), I wore masks then, too. As a teacher, I wore one mask when speaking with a parent I really wanted to strangle. I wore a different one in a boring faculty meeting; I wore a different one when dealing with a challenging student. Then I added MS masks on top of that.
  • Victoria   Jul 21, 2017 4:28 PM
    Worded very well. I can relate to this strongly as a 20 year old female with ms and I've never read anything so perfectly explained in words!
  • Jill Tiahrt   Jul 25, 2017 12:18 PM
    I can understand taking on the mask regarding your career. I was 36 when I finally got my Bachelor degree and within of 12 months I had to resign from a new company. While I am able to keep a positive attitude regarding MS, at times I wonder how much further up I would have gotten. I remind myself that while I had to resign my position due to mental issues, I am still able to walk.
  • mohjo69  Jul 26, 2017 4:08 AM
    Couldn't have said it better myself.

    Now on with the day, ready to don the mask, and always looking forward to those "superficious" moments to forget the physical and emotional pain every day brings.
  • SheaRyon  Sep 9, 2017 9:55 PM
    I understand. I wear the mask & have for 21 yrs. To everyone else I have always walked, talked and interacted like every other 45 yr old mom of 3. My symtoms were the hidden ones that noone noticed but me. Until a month ago, I hadn't even told my kids I had it. Unfortunately this summer I was in a wreck, which caused a relapse due to bodily trauma. Now I dont walk the same and may never again. I will continue to fight the fight with a smile & fight my way through this process. My Dr told me "you will not die from MS, you will die with MS. I will continue to look for the positive & hope that is true.

    For me it is hard to take the mask off. I guess it makes me feel weaker. I have worked since I was 15 & struggle to think that will have to stop.
  • Cynthia   Oct 2, 2017 7:55 AM
    I have worn the 'mask' for over 25 years. MS is ugly and I am afraid it will influence what others think, even loved ones. I wore it for my kids. I never wanted to see me as 'less than'. I figured it was good life lesson- ***** happens to every one, and it's not what happens, it's how you handle it. MS, a jerky boss, flunking a test, it's all the same really. You can only control You, and Your response. My kids learned you can survive, and even thrive in the most difficult of circumstances. But I did too good a job because now they are gone and living their own lives, and that's how it should be. But my marriage, well that's another thing. He is totally burnt out and thinking since I can't control this MS, he's gonna have to get involved and fix it. And his favorite question is why? You fell? Why? What were you doing? You broke a plate? Why? So I tried to get myself some applesauce, didn't quite make it back on the shelf and now there a mess in front of the fridge. Why? Why weren't your standing closer? Why did you want applesauce? Living with MS is like living with a Magic 8 ball. Everyday deciding your future. Would I like to go to lunch tomorrow? Answer uncertain. Try again later.