My Diagnoses are Mine to Share
A weird thing happened recently. I had arrived a few minutes late to a packed party and was taking off my coat when the words, “This is the girl with Crohn’s!” were shouted across the busy room. I hadn’t had a chance to meet the recipient of this information, so my family member shared my diagnosis before even sharing my name. This isn’t the first time that something like this has happened, either. Two common themes exist in these occurrences: strangers are present in a public setting, and I’m never ready for it when it happens.
I can’t quite figure out how to describe what this feels like for me. I’ve had the disease for a decade, so it’s not that I’m uncomfortable with the diagnosis. I’m not ashamed to have the disease, so I’m not embarrassed, per se. I’m just, caught off guard by someone sharing something so personal about me.
In that moment, when information about my body is yelled across the room, I feel like I’m suddenly on stage. Now, I must play a character. Gone is the conversation I was having about my kid’s soccer game; it’s taken over by answering the question “Well, how are you doing?” If I’ve JUST met you, then I’m going to answer, “I’m fine, how are you?” every time unless I’m sick enough to be in the hospital. And then I’ll say, “I’m in the hospital, that’s how I’m doing.”
I’m an active advocate in the Crohn’s and Colitis community, and I love sharing my story with others. Sometimes, when I meet people at fundraisers or conferences, I’ll happily share my diagnosis quickly, because that makes sense to do with that group. But every time I speak, blog, or tweet with others, it’s on my terms.
Other times, I don’t want to think, talk, or share about the disease. And that's OK, too.
Sometimes, I just want to enjoy meeting new friends from out of town at a mutual friend’s birthday, and I don’t want to get personal. Sometimes I’m tired after dealing with symptoms all morning, and I just want to forget about the disease. Sometimes, I hate the thought of bringing conversation about something that can be heavy and serious to a celebratory gathering.
I like to look for the good in most things, and there actually is a lot of good here. Most people want to point me out because the person I’m talking to has a granddaughter/cousin/neighbor with the disease. Or, like me, maybe that person has the disease. In these cases, I really do want to make a connection and support these people as much as I can. But, also in these cases, I'd like to be the person to share my personal information.
I want to tell others that I have Crohn’s disease in the way that makes the most sense to me. Rarely will that be within seconds – or even minutes – of meeting a stranger. I’d at least like to make them look at cute pictures of my kids and dog first.
Please think of personal information as privileged. This information was shared with you, but it’s up to me if you should share it with others. If you think that my diagnosis should be shared, then please privately pull me aside and suggest that to me first. I’ll almost always agree, but at least this way, I’ll also be prepared.