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When I Was Mocked for Wearing a Mask That Saves My Life

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Being chronically ill is something I would never choose, nor would I wish it onto my worst enemy. Today I was reminded of how little the general public know about those who are fighting an invisible battle, and just how tough things can truly be.

I headed down to our local mall to the pharmacy there to collect some of my chronic illness medications. I had finished the last of it this morning, and having just come out of hospital I was feeling strong and needed a change of scenery. Plus I knew it would be a quick five minute outing and I could at least cope with that.

Looking at me, you would never know that there is anything wrong. I look like a “normal” 29 year old – especially after my emergency admission and five days of plasmapheresis. For those of you who don’t know, I have myasthenia gravis – a neuromuscular autoimmune disease that affects the message between my nerves and muscles.

My latest treatment has completely destroyed my immune system, meaning that I cannot fight off a simple cold and have to stay in isolation as much as possible.

This means I have to wear a medical mask whenever I am around other people. I didn’t want to look “sick” and wanted something to make me happy, so I ordered a special mask from overseas that is pink with hearts and rainbows. The mask makes me smile and reminds me that there is always something good after a storm. I also sometimes have to use a walking stick to help me get around. The walking stick is a beautiful floral one that belonged to my granny that makes me feel bolder to go out into the world.

Everyone at the pharmacy knows me by now as I go there so often, and I am always greeted with a smile and questions about how I am feeling.

Today was tough, though.

As I was waiting in the queue at pharmacy, the young girl in front of me turned around, looked at me and started to laugh. She then turned to her mother (or older sister) and said, “You have to see the girl behind us wearing a crazy mask. What does she think this is?” The older lady very obviously turned around, gave me big eyes and immediately burst out laughing.

For the rest of the time that they were being served, they kept turning to look at me and discussing me – they didn’t even try to hide the fact!

I wanted to cry.

Usually I would have taken the opportunity to try to educate them about why I am wearing my mask, and that it is not simply to look “cool” or try create a statement. It is not to draw attention to myself. It is to save my life.

Please, be aware of those fighting a battle that you know nothing about. Ask questions before you judge. And take the time to teach your children about people that are “different.” We all have hearts and souls, and it is moments like this that can truly break someone.

So next time you see me, please smile at me. Ask questions if you want to. And know that I appreciate each of you who takes the time to learn more about rare diseases.

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Thinkstock Image By: bignoze

Originally published: August 16, 2017
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