Being Honest about Being Sick

Hi. I’m Elise and I’m sick. My illness is chronic and painful and invisible. I have Rheumatoid Arthritis.

Okay. So telling folks that I had RA didn’t quite go like that. I wish it had. I wish I’d said that to people my whole life. I wish I’d always been open about being sick. But you know what they say about hindsight and all that. Woulda, shoulda, coulda.

In reality I hid my illness for a very long time. I was diagnosed when I was 10. (Even though I now know that I was symptomatic long before then. My folks just didn’t know what it was.) Sadly, at 10, I didn’t really understand what having an invisible illness meant. And because I live in a pretty isolated part of Texas (arthritis support-wise) I didn’t have anyone to explain it to me. I didn’t have support groups or education. I didn’t have the internet. I had pamphlets that were geared toward adults. So I pretended that I was a normal kid and charged on through life.

Until my medication made me so anemic that I landed in the hospital. At 16. Not only was I sick I also had all the normal teenage girl hormones racing through me. And I was proud. So I sat in a hospital room for almost three days heartbroken because not only did none of my friends visit me, none of them even noticed that I’d disappeared for three days. I should have learned that hiding my illness made for a lonely life. Of course I didn’t. I just worked harder to hide it.

And then I won the Hypochondriac Award at a club banquet in college. I went to my apartment, tore the award into pieces and cried for days. I considered dropping out of school I was so wrecked by it. And again I should have learned to be honest and open. And of course I didn’t.

I disappeared after college, isolating myself from the friends who’d given me the award that had broken me. I got really depressed. I spent more than one night staring down a bottle of painkillers, considering taking them all. And then I got a job in the patient education department of a local cancer treatment center. I worked side by side with nurses and doctors to educate patients about their illness. And I was finally able to learn about what it meant to have RA – that it was more than pain and pills. I learned about flares and triggers and natural remedies. And I was finally able to tell people what had been wrong with me all of those years.

It took me a while but I finally told all those friends who had given me the award that had been meant as a harmless joke. When they understood that I’d really been sick the whole time they all apologized and chastised me for not trusting them with the truth.

And that’s what this rambling post is about. Trust and truth. Invisible illnesses are terrible and isolating. You look fine while you feel like you’re dying. People don’t understand. That can result in harmless jokes that cut to the bone. Or it can result in things like nasty notes on cars when you park in a handicap spot and walk away looking fine. The fact is, no one can understand an invisible illness like RA if people with these illnesses keep them hidden. We have to trust the people in our world with the truth. We have to be willing to explain that even though we look fine we’re not.

If you’re part of this invisible illness world, please, tell the people in you’re world. Don’t hide when you’re sick. Let people see. Explain why you seem fine one day and terribly sick the next. Educated yourself on your illness so that you can in turn educate others. Don’t like being sick keep you isolated and alone. Trust people with your truth. I can promise you that it won’t be easy. You’ll probably have friends walk away. But the ones who stay…they’re the ones you want along as you walk through life. They’re the ones that will pick you up when you’ll fall. They’re the ones that will see you for the strong, brave person that you really are.

That’s right. Strong. Brave. That’s you. That’s me. That’s anyone who is battling an invisible illness. Remember that.


2 thoughts on “Being Honest about Being Sick

  1. Great blog entry. I’ve had RA since 2009 and my experience in telling others was different. I was open about my diagnosis to friends and family, but most people don’t get it. RA is a very isolating disease. The general public doesn’t differentiate it from osteoarthritis. The RA patient usually ends up having to educate those around them about the disease. Some are willing to listen, others are not. You learn to say “fine” when asked, “How are you?” after watching eyes glaze over with indifference if you tell the truth. Chronic illness is a great divining rod to determine true friends from fair weather friends. People have a hard time believing in this age of medical advancement that people can hurt as bad as we say over a prolonged period of time so we get labeled and disregarded. People make judgements: we don’t look sick therefore, we are not as sick as we say we are. If they only knew what it is like for us in a day of our lives. Not that I would wish this hell on anyone. I choose who to tell now because I realize educating everyone I encounter is exhausting. If I tell someone about my illness and I get the eyes-glazed-over response, I stop right there.

    • Thanks so much Mischelle. You are so right, you do learn all sorts of ways to defend yourself against those folks who just don’t care. I refuse to stop trying to educate people though. You keep trying too. Only folks like us can make this invisible illness visible. Stay strong!

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