Outsider Looking In

By: Clare Amy

When I write a blog or talk about my disorder, I sometimes feel a bit like a fraud. Unless I have an episode, you wouldn’t be able to tell I have a skin condition, like EB Simplex. To outsiders I have a pretty incredible life, touring the world while doing what I love, dancing and singing. I really have nothing to complain about and sometimes, I have to pinch myself and take a step back to look at how lucky I am.

But to the insider, to me, it should never matter what the outsider thinks. I shouldn’t feel like a fraud. The outsider will never know or understand the insecurities I feel or the chronic pain I feel in the bottom of my feet. The only way I can describe the pain is like I am constantly walking on hot coals. And of course, being as active as I am doesn’t help. All the rehearsals and the routine workouts aggravate it; even just walking during the day can cause me immense and in some cases, paralyzing pain. So while on Instagram my life may seem enviable, my day-to-day can sometimes be quite different. Everybody has their own journey and obstacles that they are trying to overcome, no matter what YOU may perceive from the outside.

When I was 16 years old, I went on a ski trip and did not put the right dressings on. I ended up entirely ripping the skin off both of my shins, from ankle to knee, because of my skin disorder. The entirety of my lower legs were completely covered in water blisters, some were the length of my whole shin. I had never been in such pain and the scars lasted 3 years. There are some people out there who would want to post these photos on social media. There are others, that would prefer to share a photo enjoying the beach two weeks prior instead. And that is exactly what I sometimes do. To some they believe this is showing an ideal version or a fake version of their life, which I think is completely incorrect. It is absolutely my choice to share my highlights or my low points. I am choosing to express the amazing, silver linings I have when I am going through tough times. And once again, why should we worry about what the outsider sees?

MIGA Blog- EB Simplex advocate Clare in waterfall

I can understand why Instagram feels to some like a place to show-off, a place for people to try to be who they’re not, or where they post an ideal version of their life rather than the reality. If we STOP looking at social media as a place where we go to compare ourselves to others, but instead see our feed as a place to be inspired by the amazing possibilities that life has to offer, we could build an amazing community through it. And in all fairness we definitely get to choose who we follow and who we don’t. Some people use their pages to build awareness of disorders, diseases and deformities, and others just do not feel comfortable sharing such intimate details. Both are valid.

So as Oscar Wilde once said: “Be yourself, because everybody else is already taken.” Never feel like a fraud for feeling or experiencing what you have, we are all on our own journey!

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