Body image and MS: how many selfies do you have?
Photo by Ismael Sanchez on

Body image is everything these days. We’ve all become hyper-critical of our appearance and at times, just as critical of how others look at us, which makes us believe we can judge them as harshly as we think they did.

“My god, you need to learn how to exercise again!”

“Size zero, who fits in a zero, a Barbie doll? It definitely didn’t fit her!”

“He’s cute but isn’t it so sad he is in a wheelchair?”

Why do we spend so much time worrying about our body? Self-judging is a waste of time. Judging others on their body image even worse.


Beauty doesn’t survive time nor space, especially when it only runs skin deep and everything we own just wants to reach the bottom of our feet by the time we’re 60 years old.

Also, it doesn’t reveal someone’s true worth.

And, more importantly, it’s none of our business what others think and do about their body image.

Each time we glance at ourselves in the mirror, our body image gets its narrative from our personal experiences and from communicating and being in relationships with others. What we see is a work in progress happening within our own mind.

The way you perceive yourself is difficult enough without physical limitations. When you receive a diagnosis of an illness that might lead to certain disabilities, you feel as if you just entered a minefield filled with critical questions you don’t know how to answer yet. The psychological adjusting process will take time, and while some people go through physical changes without distress, others will take longer to accept what is happening.

When trigeminal neuralgia became a definite feature five months before my diagnosis, I dreaded being out and about. Predicting when its piercing pain would elicit an audible reaction was something I hadn’t mastered yet, and I feared people taking me for a fool each time I yelped. I wanted the names of my symptoms printed on my cheeks and forehead and for everyone to see to prevent them from judging the invisible.

During the two-week hospitalisation before my diagnosis, a consultant asked his students to examine my face from a distance and tell him if they noticed anything out of sorts. I hadn’t a clue what he meant, so I found it rather intriguing. One student said, “Left!” Again, I was oblivious to what the student meant. As soon as the army of doctors left, I ran to the bathroom to watch my face, to search for “that left side.”

Facial changesAt first, I saw nothing. That was until I tried Rubin’s optical illusion test of looking at ambiguous two-dimensional forms.

Fourteen years post-diagnosis, what I saw in the mirror still makes me shiver.

There was a clear difference in tissue and muscle texture; the left side much thinner, not even thick enough to squeeze between my thumb and index finger.

When I placed both my hands on my cheeks, tears welled up because I clearly felt the difference.

And then it hit me.

I was sick.

My face had changed, and I never even noticed.

For Christ’s sake, I never even noticed it.

Within that five-second moment, my body image changed forever.

To heal that hyper-critical view of myself, I needed to begin with myself and go back to when and where body images are at their worst: as a child, and in school.

I’ve always been overly critical of my own internal perception. As a child/teen, I had buck teeth, wore glasses, had an awful ongoing allergy to just about anything and had hair that never did what I wanted it to. After all, I was an easy target who just wanted to fit in and be part of the pack.

Glancing back now, the lessons I learned from those pestering me? It showed me how not to treat people, and instead how to be compassionate and have empathy for those who felt like I once did. I am sure it lead me falling in love with the field of psychology and psychotherapy, something I can only be thankful for.

Over time, my body image changed from a negative to just above positive. No more buck teeth and glasses. The long disobedient hair turned into a short pixie haircut. Even that awful allergy disappeared after finding the right doctor. Still, in silence and occasionally, a more negative body image would rear its ugly head, as untying it from emotional experiences and people’s behaviour took some time.

Perhaps I feared people’s reactions more than I feared to look at my own individual form.

And then MS arrived

It more or less crashed onto the grey blubber bus others refer to as ‘my brain.’ On the day of my diagnosis, I saw myself as a contorted form, sitting awkwardly in a wheelchair by the end of that year, unable to do all the things I still wanted to do. As distressing as that idea was, I also felt that whatever had been eating my left cheek, would keep on doing so until there was nothing left.

During the first year of my diagnosis, I also used to limp as my left-hand leg wanted to stay indoors while the other wanted to go dancing.

What about using a walking cane? The penny eventually dropped while on holiday in Italy, when I felt more in need of a Roman chariot than a new walking cane, as the one I already owned was still at home in Ireland.

Similar events brought on the ownership of several black eyepatches and at least 15 pairs of sunglasses.

I am not a pirate. Sunglasses will do me just fine (Not).

At first, life with multiple sclerosis was a period of continuous trial and error, and my body image crashed and burned on more than one occasion, sometimes in plain sight, and I felt that there was nothing I could do anymore to redeem the leftover pieces.

Even my blue eyes, the only thing I used to love about my physical body, had to withstand the worst of the MS onslaught in the form of optic neuritis, radiating facial pain and hyperopia as well as presbyopia, and they still do. Nobody is bullying me anymore, yet I am convinced everyone is looking at me when I leave the house, and I see them thinking negative names.

But, in reality, people have far more important things to think about than how you, me and the rest of the world looks, and even if you were on their radar, they’ll have forgotten about you within the next ten minutes. We’re all flawed in some way, but you don’t need external praise, affirmation or approval, so please do forget about your body image. There will always people who will either love or hate you. The only one that matters is you, and you must make sure you love yourself first.

I have friends who are affected by ALS, MS, or other neurological disabilities. Some have issues with how they perceive themselves while others don’t. My perception of them is entirely connected to the assistive tools and walking aids they use as, without them, their quality of life would be decimated. I see them as one, as a complete physical, mental, and emotional entity of who they are. Also, I realise all too well they paved the way to my own acceptance should one day my mobility be reduced to a wheelchair, and for that, I can’t thank them enough.

Does this make any sense to anyone?

You see, you didn’t ask for your MS diagnosis. I didn’t. Nor did the other 2.5 million multiple sclerosis patients around the world.

Unintentionally, your illness found itself stuck to your future. MS almost intentionally refuses to leave or give up its secrets by denying us a cure.

People with MS -or any other neurological illness for that matter- have been put in situations they never imagined they would find themselves in at the time of their diagnosis. Misperceptions and negative labelling by those without disabilities can do much harm and it leaves a definite imprint onto your mental hard drive.

My biggest body image issue is the weight gain I’ve experienced since the day I began my treatment, now 14 years ago. Within the first 12 months, I had grown out of all my jeans. As my list of medicines got longer and more complex, the clothes I bought to overcome the previous bout of weight gain stopped being a good fit as well, and my self-esteem dropped each time I had to buy clothes at least one size bigger.

Because early retirement looked like a dreadful idea, and in order to remain at work, I had steroid treatment after steroid treatment, either as intravenous or oral treatment. During the 10 months before my retirement, I had four steroid courses lasting 28 days each, and I gained 3,5 stones (approx. 22,5 kg) in that short amount of time. Girls are only happy when out shopping for clothes, but I had it. I was just sick and tired of having to spend money on clothes I would continue to outgrow, including causing continued self-assessments in fitting rooms while trying on new clothes.

Financially it depleted my bank account, and emotionally it added more layers of self-criticism. MS didn’t just play tricks inside my brain, it also scrapped whatever gain my ego had made. The reinvention of my body image, therefore, needed to happen in supersonic speed. Trying to liberate myself from emotions linked to how I used to perceive my body was not an easy thing, and it still isn’t.

However, the path of least resistance was sitting at home waiting for a cure for MS to knock on my door and say, “How dare you? I am here but I had to look for you all by myself. As a result, you will not get to enjoy it because you weren’t looking for me!”

Whatever happened as a child because of my appearance, it was not the cause of how I ended up with multiple sclerosis. Any associated emotional healing regarding my body image would need to be done by myself only. Just like I forgave those who used to pick on me, I had to forgive multiple sclerosis for what happened since, and most of all, I needed to forgive myself.

The first time I thought, “You need to forgive yourself for having MS,” something clicked. The self-stigmatisation, over-analysing were leading to confusing emotions, belief systems and experiences around having MS.

I was ready to step up and take accountability for how I will see myself either in the moment and/or in the future.

There’s only so much introspection you can endure every day before your internal dialogue turns into starch while you gaze into the unknown.

Remember Buddha’s wise words, “What you think, you become.”

Every single person has limitless potential to be more than the failed body image they believe they have. If only for a second they could give themselves credit for who they are, not what they look like, they might be able to push that body image to the positive side of the scale.

In the end, disabilities are a part of you. Of me. Of anyone with an incurable illness or those who sadly acquired them after birth. Give yourself some credit every day, and just like myself, you might just have the odd obstacle that you’ll eventually be able to bend into a slapstick body image quote.

More information

Best Books on Positive Body Image

  • Embody: Learning to Love Your Unique Body (and Quiet that Critical Voice!) by Connie Sobczak and Elizabeth Scott (Amazon)
  • Mothers, Daughters, and Body Image: Learning to Love Ourselves as We Are by Hillary L. McBride (Amazon)
  • Positive Body Image for Kids: A Strengths-Based Curriculum for Children Aged 7-11 by Ruth Macconville (Amazon)
  • The Body is Not an Apology: The Power of Radical Self-Love by Sonya Renee Taylor (Amazon)
  • Body Kindness: Transform Your Health from the Inside Out—and Never Say Diet Again by Rebecca Scritchfield (Amazon)

Signature WMX

blog-awards-2018_winners-gold-mpu-e15716510568512018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and with appropriate and specific direction to the original content.


5 thoughts on “Body image and MS: how many selfies do you have?

  1. My daughter struggles with MS. I have a battle with a rare blood cancer. The greatest challenge for me was to learn how to still be myself and live as normal a life as possible. I know that sounds so easy to say but each morning when I awake I bless that I have another day. I find great pleasure in writing which helps, I am still able to travel (within the UK at least, insurance overseas is now just too expensive because of the cancer). I think it is very important that those with MS help each other. We have a group for all types of lymphoma and that was a real help in early stages.

  2. Brilliant post Willeke, agree with so much of what you’ve said. Self love is so so important. I’ve gained weight with my MS and, having once been a fitness junkie, it’s been hard to accept but I’m getting there. Our bodies deal with so much crap with this disease that they need our love and not our hatred. For the first in my life, thanks to MS, I no longer measure my daily happiness by the numbers on a weighing scales… And I had great fun binning that scales this year 😂😊

  3. I have no selfies in my phone because no-one cares. Not in a bad or good way. It’s just not important. I remember those people who would never want their photo taken because they didn’t like how they looked. I asked them to look at a photo of themselves from five years ago and tell me whether they thought they looked gorgeous in it or not. Most people thought they looked better then, rather then now. So why were they wasting all that time worrying about how they looked. Just get on with life. Life is for living. You’ll never as young as this forever. So make the most of it.

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