Inflammatory bowel disease can be embarrassing. Our instinct to hide the disease can be very strong, and might even protect us from discrimination and prejudice. Yet being ‘out’ about IBD can be positive, and even healthier. So — are you out?
Let me say: I didn’t invent the ‘coming out’ analogy for IBD. It’s often used in the medical literature to talk about people with illness, especially people who hide mental illness. There is evidence that hiding an illness is much like hiding sexual orientation or a substance abuse problem. (The term of art in the literature is ‘concealable stigmatized identity‘.)
There are good reasons a person might choose not to be ‘out’ about IBD. Many societies have strong taboos against anything to do with poop. People often react to talk of illnesses like ours with ignorance or disbelief, and it can be hard to find a sympathetic ear. To the extent diseases like IBD are ‘stigmatized’, hiding a diagnosis can be a way to avoid that stigma.
So when I asked Crohnology members if they were out, I was surprised that most of the people who responded were. Maybe out people are more likely to answer the question, but the answers were interesting across the board.
Of course, some people said they weren’t out: Siren said she will “really only tell someone if I absolutely have to”. She talked about a time she came out to her boss:
I had an instance once before where I was hospitalised, I told my boss who was sympathetic at the time and promised not to tell my co-workers, only to find out everyone knew about it when I got back to work. It’s hard enough explaining your disease to the people you are close to, let alone a bunch of people who will (in my experience) pass judgement through fifth hand information.
Ryann had a similar experience in graduate school, where many of her classmates felt she used her diagnosis as a ‘crutch’, to get out of work. But still, Ryann says she is out: “I am very open about it because it is who I am.”
Many of the responses emphasized how understanding other people have been. Kayla wrote:
I’m a pretty open book…. I do tell people about my symptoms and medication side effects so that they know what I’m dealing with and they understand frequent bathroom trips or irritability for example. I find that almost everyone is receptive to all of this information and tries to be empathetic.
I found that when you accept your disease and start to be open about it, it’s a great relief. I know Crohn’s patients that hide it and it kills them. They think about what other people would think. In fact, I found out that most people are good in heart and have great empathy and understanding.
Some of the answers emphasized how important it is to be open, to help spread awareness and compassion for people fighting the disease. Andrew wrote:
I have always been very open with it…. We can’t ever hope for an authentic and compassionate understanding of this illness unless we open up and share with others.
Along similar lines, Stéphane says:
I’m open about it in order to do my bit to diffuse some of the squeamishness, the stigma and shame associated with talking about these bodily functions…. One friend blurted out what others were probably thinking, “Who talks about these things?” or who’s crazy enough to share such things? Well, those of us who are changed by IBD want to talk about it so it isn’t a secret, hidden, to be endured in our solitary sick rooms.
Since this is the Crohnology blog, a bit more about that medical literature: there is a good amount of research showing that being ‘out’ is healthier, from a psychological perspective, than staying closeted (or ‘water closeted’, for IBD). One of the problems with being ‘in’ is that it helps reinforce and internalize the stigma associated with the disease: this is bad, because “research has shown that internalized stigma can be corrosive to the self and well-being.” This includes low self-esteem and depression. In fact, new research suggests that ‘out’ people are healthier physically, as well, because they are able to benefit from support from the people around them.
That said, there may still be good reasons to stay in — especially if you are pretty sure the people around you won’t be supportive. A little disclosure: I am not exactly out. When I was diagnosed, I had bad experiences with people who didn’t understand my disease. Today, I’m not even really out out to most of my friends, though I’ve come to see the toll this takes on my self-esteem and relationships. (I also keep my online identity a bit fuzzy, because I worry about my offline career — granted, mostly because of things I’ve written, and not because of the disease itself.)
So the point of this post is not that you must be out. There are good reasons to be out, and more and more people willing to be supportive and understanding of IBD. Certainly, being out helps spread that understanding and awareness, making it easier for the next person.
Photo “un brin de toilette(s)” by Flickr user sophie & cie used under Creative Commons license.