Not my face!

162974080234952360_x4ok1y8s_fSomeone once said “Babe, you may have MS, but you’re still sexy. Never forget that.”

Shortly after my diagnosis, my then-boyfriend uttered those very words. He must have seen me look at myself in a critical manner one too many times since returning home from a two-week stint in hospital, wondering if ‘MS’ really was written on my face.

Even though I don’t usually give in to superficial words like this, and don’t necessarily follow fashion to a T, hearing his words did wonders for my mind. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself. Nine years ago, his words became a quick-fix mantra to pick myself up when I needed a boost.

Bada bing, bada boom!

Confidence back!

Although now reduced in effectiveness, every so often, those words just ring in my ears. Of course, there’s better advice out there someone with a chronic illness wants to hear, but sometimes you just want to find solace wherever you can find it first.

In a world of selfies and size zero clothing, a negative body image can weigh heavily on healthy people, never mind disabled people. Being ill in itself often makes you feel less desirable. In the world of MS, where wheelchairs spread doom and gloom to those that get hit with that tag, body-image requires a whole new level of acceptance.

I firmly believe beauty is limited to time and space. In addition, it only runs skin deep and definitely doesn’t reveal true worth. I was happy with my big blue eyes, clothes size and height, but I never had America’s Next Top Model aspirations and nor did I ever think I was. But oh, how did my body take centre-stage five weeks before my definite diagnosis.

Sick… I knew I was sick. My old – emphasis on ‘old’ – GP kept on misdiagnosing me for 5 months and I had been in and out of work, not getting anywhere, save from feeling sicker as time went on.

It was time I became proactive and did something drastic: check myself into hospital via Accidents & Emergency, bypassing my old GP and whichever department he was thinking of sending me to next. If the mountain didn’t want to come to me, I was hell-bent on action, and I would go get that mountain myself. I do love a bit of anarchy every now and then.

Then and there it hit me. I ogled the mirror after one consultant, accompanied by a battalion of students in medicine, asked me to stick out my tongue to them. “With pleasure” I thought, “it’s not every day a doctor asks me to do so.” Afterwards, he asked his students to look at “her face, intently look at her face.”

One of them replied “Left side.”


What did they know that I didn’t about my cheeks?

Left side, what is wrong with my left side? First my tongue, now my face.

Don’t touch my face, mister, I need to talk, do lots more of it the next few years! Talking, yelling even!

As soon as the army of doctors left, I ran to the bathroom to watch my face, to look for “that left side.”

The chill of that moment still makes me shiver. There was a clear difference in tissue/muscle texture, the left side thinner, not even thick enough to squeeze between my thumb and index finger. When I put both hands on my cheeks, tears started welling up because I could clearly feel the difference.

I was sick.

My face had changed and I never even noticed. At that moment, my body-image was altered.

Something was eating away the left side of my face, so I had to reclaim that lost part of my body. Suddenly the body I had been comfortable with for a very long time, took centre stage.

I couldn’t pass a mirror anymore without quickly looking if the rest of my face was still there.

Nine years later, my left cheek is still thinner than my right cheek, but I’m not that worried anymore about the squeeziness of my cheeks.

My boyfriend beat me to it with magic words. And every so often, those words still ring in my ears.

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

12 thoughts on “Not my face!

  1. I walk awkwardly and have a bloated face from the steroids I take for my condition. Its quite different to the person I used to see and it’s hard isn’t it?
    A very honest post, thank you.

    1. Thanks Helen. Yes, it’s hard sometimes. Used to be on steroids myself but stopped taking them because my weight ballooned big time. Hope you’re keeping well otherwise? Take care!

      1. I’m doing well thank you, days are variable, but I’m learning to ride a bike and I’ve only been walking again for 2 and a half months so life is brilliant!
        Take care and I hope to read more from you soon.

  2. Hi Billie, you are an inspiration for other sufferers of MS. My elder brother had it for many years and he too never, ever complained to me or to mum and dad.I guess his wife took the brunt of it though and he put on a different face for us. Luckily, he did have a wonderful sense of humour and was the life and soul of any family gathering.

    You are doing the best thing by remaining as positive as you can and I applaud that. You are so right that beauty is limited to time. Good looks fade with age but when someone has a beautiful soul it’s there for all time and even outlives death in the memory of those around them. I know this because my brother had a beautiful soul. I’m sure you do too.

    1. Carole, thank you so, so much for your very kind comment. I’m humbled and feel honoured that you find some inspiration here.

      I’m sorry to hear your brother had MS also, but fair play to him for putting on a brave face. Humour is so important in life and it makes the day easier to get through. I sense your brother stayed positive come what may also, and I’m glad to read he was the life and soul of any family gathering.

      Like you say, we do what we can by remaining as positive as possible. Sometimes it’s as if people expect ill people to be boring or unable to laugh every single day, or be unhappy because of our predicament. Life is simply too short to be negative.

      Again, I am truly humbled by your words and can only extend the very same to you and your brother for both being strong and staying positive. Thank you so much for following my blog. Sometimes you meet people online that can touch the very deepest of your heart, and by your comment and strength, you surely have.

  3. Omg I have to look at my face now! You articulated my feelings towards my own body so well. My right leg has lost muscle mass and for someone who ran and did weight training it blew me away when I first noticed it. Time, therapy and reading shared feelings helps too .

  4. Self talk seems to be the part of MS with which I have the hardest time. I played soccer for 20 years before MS. When I have days where it is hard to move or my muscles lock up, I look in the mirror and see all I no longer am. It takes a lot of discipline to look past all we no longer are to the strength of who we are. The strength was always there, but it just shone a bit differently. Thus far my key has been learning to appreciate the new light underneath the haggard face staring back at me in the mirror.

    1. It’s not easy to do Geof, believe me, I know all too well how getting past thoughts like that can be a battle in itself. Like you say, focusing on it in a different way is what is best. I always say that each negative has a positive also. I made a promise to myself that, if I wanted my life to be what I wanted it to be, I needed to step up and not let things bring me down. Sure, I can sit here crying all day, every day, but that wouldn’t help anyone, including myself. In the end, I’m here to make people happy :D

  5. Billie, this is one of the most breath-holding posts I’ve ever read. Brilliant and I agree that words can have huge impact ~ especially those that echo positively and which were spoken with love.

  6. I don’t have MS … at least not to my knowledge but I do seem to have just about everything else. I don’t feel attractive anymore. I barely feel female — fake breast, no nipples, covered with scars. Naked I look like … I don’t even know what to call it. Illness, surgery, missing pieces (literally and figuratively) make it hard to feel attractive much less sexy. I wish there was a cure for the side effects of illness.

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