My experience of MS body-shaming

Written by
Willeke Van Eeckhoutte

When you open fashion magazines, your eyes are drawn to images of feminine figures who seem to be on a diet of water and air. Simultaneously, your mind asks you, “Why is my body not normal? Why is it different?”

There’s no denying how our perception of ‘the perfect body’ keeps being tested, especially when Multiple Sclerosis (MS) has altered your looks. There’s also no denying that body-shaming hurts. It robs you of any mental or emotional strength on any given day and is easily turned into feelings of shame, anxiety and/or depression. Self-conscious, much?

I am no different.

Judgement without understanding

It stings when comments are made that I perceive to be criticism, as if I didn’t judge myself enough already, valid or not. Several times I’ve been told to smile more because I look too stern or to take off the scarf around my neck as it’s hot enough outside already. Or sometimes, I’m told about how losing some weight would help me get rid of all my symptoms.

But little do people know that smiling causes piercing facial pain and that I am anxious every day about it causing a new cycle of trigeminal neuralgia (sudden, sever facial pain). As for the scarf, it’s always there because of my osteoarthritis and keeping warm is really helpful.

As for the weight issue, my MS diagnosis was the result of a five to six-month period of symptoms like trigeminal neuralgia, staggering fatigue, left-side nerve pain and several other, difficult to place neurological symptoms. The only difference between now and then is that my weight has doubled since. That means my weight was unrelated to the genesis of “all my symptoms” as it is now.

My fool-proof answer every time is therefore, “Walk a mile in my shoes…”

Easier said than done

Being the perfectionist that I am, the challenge of not attaching any worth or importance to people’s crackpot amateurish remarks in relation to how I physically deal with MS, is no small task. Even getting into a body-neutral mode can feel like a herculean task.

There’s a right way of being chronically ill – our way. And then there’s the wrong way – their way. As such, we need to break the body-shaming stigma around the physical appearance of people with MS or disabilities in general. Attacking people on how they look is not OK. Not in the “normal” world and definitely not in the world that people with disabilities occupy.