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Behind Closed Doors: The Reality of Living With Invisible Illness

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I live with Lyme disease, co-infections including Bartonella, fibromyalgia and postural orthostatic tachycardia syndrome… just to name a few! Every day is different. But the reality is the mask I often wear can look very different to how I’m feeling.

Nobody wants to be sick. So when you’re sick on a daily basis it’s exhausting. On those exhausting days I often hide away, because I have no other option. I’m out of smiles, out of energy and usually can barely move. Walking from my bedroom to the lounge room or the kitchen is an expedition. On the OK days I push through, I do my hair, get dressed and actually look presentable. I may even be able to go out with friends or run a few errands. On the good days I can achieve even more – work a little, go to a gig or even swim at the beach!

Those days are the best, and I’m forever grateful for them, but it does make it hard for people to understand.

They see me out, looking happy, excited, and naturally think, “wow, she looks great.” I don’t do myself any justice in this area either, because I only share my troubles with the closest people to me – my family, boyfriend and very close friends. If I even begin to feel horrible symptoms creeping in when I’m out, I make excuses and hurry off home where it’s just me. The only people who ever see me break down are my family and boyfriend, as they’re the ones who have to pick up the pieces if I’m having a bad week or have collapsed after a big event. It’s only natural, as most of us don’t like focusing on our illness or want to draw attention to it when everyone is having fun. The last thing we feel like doing is showing people how awful we feel!

This is why I believe educating people about chronic illness, and in particular invisible illness, is so important. Because it’s not easy to understand something you can’t see right in front of you.

So next time you’re out in the street and you see someone hop out of their wheelchair and start walking, or park in a disabled car spot, or shed a few tears, or line up at Centrelink, be thoughtful and open. Think about that person, and how they probably have a whole story you don’t even know about. Just because we look OK, doesn’t necessarily mean we are.

As the saying goes: “Be kind, for everyone you meet is fighting a battle you know nothing about.”

Getty Image by Diy13

Originally published: March 12, 2018
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