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Chronically Coming Out

I attended an event for my new internship with the Neighborhood Writing Alliance tonight. It was pretty incredible to see the different lives the organization has touched and to feel that I am a small part of that now. However, these types of events always build up to a slightly awkward moment: The moment when the food comes out. It was mostly finger food, lots of veggies and things. It looked wonderful, but since I was working the event I decided to stay on the safe side and just wait until I got home to eat. The last thing I needed was for Myrtle to throw a fit while I tried to garner donations for the organization.

As I sat next to my fellow intern listening to the series of fascinating speakers, however, she turned to me and asked if I was going to eat anything. The question was entirely innocent and absolutely nothing out of the ordinary, but it still set my mind whirring trying to find a simple answer. Should I just come out and say why I am not eating? Do I want to take the time to do that? Is that even appropriate right now? In the end I decided to bypass the subject entirely. I smiled politely, shook my head, and continued listening to the presenters.

These moments come up all the time. When Myrtle groans particularly loudly. When I pick the lettuce off a sandwich. When I pause during technique class to let my stomach settle or try to loosen up my stiff joints. I am really good at just brushing off the looks of concern and confusion my body inspires in others, but is that really the way I want to deal with these situations? Instead, I could use these looks and questions as moments to open a dialogue about disease, but that requires time that I do not always have. Let alone my potential listener.


Disability Studies authors often talk about the similarities between coming out of the closet as gay and coming out as disabled (Ellen Samuels in particular has an amazing article called My Body, My Closet). If there is ever going to be any change in the way disease is perceived in society, I think that we must use these moments to come out to the people around us. Only when people see how disease effects those closest (physically and emotionally) to them can there exist a dialogue about the experience of living with a chronic illness. As a person dedicated to opening up that conversation, I feel a kind of imperative to take advantage of these moments when they come along. This seems simple enough on the surface: someone asks a question and I answer it. But it is never that easy. To come out requires not only a proclamation of my status as person with a chronic disease, but also an explanation of what Crohn's Disease is, and why it affects the activity at hand. These explanations can be long, and I do not want to impose on others' time. So, instead of sticking to my guns and coming out, I just smile and nod.

It can be so uncomfortable to broach the subject of disease. How do I phrase it? How much information do I give? Do they even want to know? There are so many questions that it is often easier just to avoid the topic altogether. This, I think, is a huge problem. As hard and uncomfortable as these moments are, they are also full of potential. Once the subject is brought up, even if you do not go into great detail at first, it becomes so much easier to talk about it later on. Suddenly, the person you are talking to has permission to ask questions. These are the moments when perspectives shift, because even if they ask the wrong questions, or ask the right question in the wrong way, at least they are talking about disease, which is the ultimate goal, isn't it?

Now, if I can just take my own advice...

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  1. Man, I totally understand this 100 percent! Love your blog, Maggie!

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