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Coming out of the chronic illness closet

Posted Oct 07 2008 7:18pm

Are you still in the closet about your illness? Do you go to great lengths to hide your illness from family and friends, coworkers, random people on the street? How does it feel to hide an immutable part of you? Most of us with chronic illness have debated and/or practiced the “don’t ask don’t tell” policy regarding our illness. While it might make sense not to reveal your entire medical history to someone you just met or even your employer, I want you to examine your logic in who you tell about your health and why.

I hid my diabetes for years.  In the early stages of my disease, the people I dated, coworkers, even close friends had no idea. I would inject insulin in the restroom after every meal. My friends, clueless as to the true reason for my post-meal bathroom visits, considered staging an intervention for my “bulimia problem.”  Hiding in dirty bathrooms to inject life-saving medicine isn’t the answer. Letting people you trust into your life is. It took a courageous, if slightly loud-mouthed friend, to out me. Not really understanding the struggle I was experiencing in my head about letting people know about my diabetes, she told everyone we knew about my “pancreas problem”; waiters too slow in bringing me life-saving sugar-y drinks, people we worked with, mimes on the street…anyone willing to listen.

While I wouldn’t recommend being ousted from the illness closet before you’re ready, my friend’s lack of embarrassment about my illness showed me that I, too, could be brave and tell people this secret that was causing me pain and endangering my life. A diabetic acquaintance rock climbs in remote areas without telling his climbing partners about his condition. He could potentially go into insulin shock and need immediate medical attention during a climb. Can you imagine the fright that he would cause his friends if something were to go awry? It is important to know that there can consequences to not revealing your illness. In some cases, it’s downright dangerous.

I have known diabetics in long-term relationships to keep mum about their illness and how they’re physically feeling from their long-term partners. I know a woman who is afraid to tell her boyfriend’s parents that she has an illness for fear that they will broadcast her announcement to the world like some bad news version of the CNN news ticker, or worse, feel sorry for her. This has put pressure on her boyfriend not to slip up at family functions and inadvertently reveal her disease. Do the future in-laws have a right to know? Absolutely not. Would it be helpful if they did? Probably, given her positive relationship with them and the amount of time she spends in their company.

People want to help you, to be there for you, but you must first give them the opportunity. While there is a right place and a right time to discuss these things with those in your life, I want you to consider telling someone today that needs to know. Will you be temporarily embarrassed? Yes. Will you regret telling? Maybe. Will you breathe a sigh of relief? Possibly, but there is so much to be gained from widening your support network that taking the chance is often worth it. I’m not suggesting that you blog to the world (!) about your disease, but I am suggesting that the shame and the hurt that hiding your illness may be causing you isn’t worth it. You are entitled to your privacy to be sure, but you are also entitled to be yourself. Often being yourself means being able to take your medication when you need to, being able to have an “off” day and being able to share that you are having this experience in your life at this moment. And there’s no shame in that.

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