When you are handed a life-changing diagnosis you face many choices about how you will handle the news. Will you take to your bed and run countless Google searches? Do you choose the path of denial, ignoring the diagnosis and going on as if the sky is not falling, dealing with it only when things get so bad you have no choice? Are you the type who prefers the Lifetime movie heroine, the cockeyed optimist who cheers up everyone around her, confiding “the news” to those only in your inner circle but proclaiming to all you know you can beat this, impressing everyone with your upbeat, positive outlook?
Social media has completely changed how we engage with the world and our illnesses are no exception. Have a cold? Post a Facebook status and a request for the best gluten-free matzo ball soup. Trip to the ER? I’ve seen status updates I swear were posted from the back of the ambulance.
We live in a society that “shares” and as such has created wonderful opportunities for awareness and a sense of community where many of us with lesser known diseases previously had none. When I was first diagnosed with fibromyalgia, I knew no one else with it, and only a few had even heard of it. Hashimoto’s thyroiditis? Most looked at me and asked if that was a sushi roll.
By the time the “big one,” lupus, came along, the feeling of isolation and fear was beyond measure. I was already cautious about how much I shared my health struggles on social media and now I faced yet another obstacle. I’d seen those friends who lived their lives online and shared every detail and I knew that wasn’t my personality. As a public school teacher, I’ve always been conscious of what I’ve posted. How could I merge this new “truth” of my life without sacrificing my privacy? How could I be honest with my friends and family without sharing how my world was being turned upside down?
In the beginning I erred on the side of extreme caution. As I was in and out of the hospital those first months, you’d never know it from my news feed. I learned to use “coded language” to let the few who even knew I was in the hospital again know I was home. (“There’s no place like home” carries a lot of meanings in the eye of the beholder.)
Looking back, I think I was so afraid of being the “over-poster,” looking like I was seeking pity or, even worse, attention, that I don’t think I even used the word lupus until we were fundraising for my first lupus walk.
Slowly, I began letting people know through informational posts during May, Lupus Awareness Month, facts about the disease as my way of sharing my story in a generic, non-threatening way. Perhaps I figured if people knew more about my disease they would understand more of what I was going through.
Unfortunately, facts are just that: facts. They lack the personal animus that give them life so slowly over the past few years I’ve begun letting people into my world with chronic illness.
This is what led me to finally decide to share my stories with The Mighty. I was tired of playing the plucky upbeat Lifetime story of my life online. Am I scared about the possible ramifications of sharing my truths in this way? Absolutely. Do I worry about being judged and derided for my decisions about sharing my stories? You bet.
But I’m too tired fighting for my life and balancing too many medicines and too many doctors and too many complex medical conditions and working and my husband and two beautiful children to worry too much. Because when it comes down to it, it’s my truth and my stories to tell and I get to hold the pen – not some Hollywood screenwriter. And if sharing my stories can help some scared person out there who needs to know they’re not alone then it’s worth it.
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Thinkstock photo via opolja.