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Why I'm So Open to Talking About My Illnesses

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I’m starting to forget what sleep feels like. So what is there to do at 4 a.m.? Write. Often when a conversation starts with someone about being sick, they ask, “Are you OK talking about this?” and my answer is always the same… absolutely. I’ve been questioned a great deal about why I talk about my illnesses as frequently as I do. I’ve been asked, “Why don’t I keep it to myself more? This one person I know, you’d never know they were sick.” Well, good for them! That’s great they keep it private. And I totally understand wanting to do that. But I’d like to go another route and I hope it’s respected.

– For one, it’s a coping mechanism for me. Talking about it makes it easier to accept and makes it not as petrifying as it can be sometimes.

– If I’m not going to talk about it, who is? I strive to spread awareness so that if I tell someone about it, they’ll remember and tell someone else.

– Is there such a thing as silent fundraising? I don’t think so.

I know there are many people out there with illnesses – whether they’re autoimmune, chronic or temporary. For me, I have three illnesses that will be with me until a cure is found. I’ve had lupus for six years now, fibromyalgia for a year and a half and POTS for six months. I’ve absolutely had these illnesses for longer, but this is when I was diagnosed. I know I haven’t gone into much detail about my fibro or POTS symptoms (or what POTS even is), but that’s for another night of not sleeping.

After a memory of a book from a friend followed by a night of being unable to sleep, I got to thinking. I always believe and try to tell people to own their story. Everyone has a story, illness or not. But own it. Don’t be ashamed. Be vulnerable. If you’re judged, those people don’t belong in your life. Be you…bravely.

People can be whoever they want on social media. They can take 20 pictures of something until they find the perfect shot. They can be having a horrible day but post a picture or video that makes it look like everything is fine. That’s what cell phones, iPads and computers have done – they’ve become a mask people can hide behind to portray their world however they please. I try to be as authentic as possible, which we can all deep down agree (whether you like to admit it or not) is a great deal harder than we’d like it to be.

I have two Instagram accounts…one I started when Instagram became popular years ago, and another I started about a year and a half ago when my health started to decline. I decided this one would show everything there is to show about being sick. I’d give lupus, fibromyalgia and POTS a face for all to see. I still struggle daily wondering if people believe me or if they “get it.” I don’t post all pictures of the bad days – of me laying in bed all day or on the bathroom floor. Me missing parties and vacations and work. I’ll post pictures of me at these events, but what you’re not seeing is me in the hotel 90 percent of the vacation or sleeping the days away.

I talk about whatever is going on as much as possible and pair my words with an appropriate image, but pictures are often more memorable than words. When pictures show something, it can be perceived differently by everyone or even misconstrued. What can I do about that? I can keep sharing. I can keep writing. I can fight. I can talk. I can educate. I can spread awareness. Fighting is my life right now…every single day. So whether it’s my highest highs or my lowest lows, I’m here to share it all. Because if you don’t see it all, how are you going to truly understand what life is like being sick?

Thinkstock photo via Ingram Publishing.

Originally published: September 6, 2017
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