By Maya Brown-Zimmerman
If you have a chronic condition, do you have a responsibility to educate other people about it? This question came up in a conversation I had awhile back with some friends who, like me, have Marfan syndrome, a rare connective tissue disorder. Some maintained that we do, because otherwise how will others get diagnosed, and how will treatment options progress? Others argued no, that is not our responsibility. Of course, this isn’t an issue just for people with my diagnosis, but something that all of us with a rare diagnosis have to navigate.
For some of us, our diagnosis affects how we navigate the world. For others, it affects our outward appearance. Marfan syndrome, which my son J and I have, causes most affected people to be tall…some very tall. Kids and young adults tend to be extremely thin (for example, in middle school I was 5’10” and 90 lbs). We stick out, and strangers often feel compelled to comment on that.
Now, I spend a great deal of time in various Marfan education and awareness related activities. My whole family has multiple articles of Marfan-themed clothing. We’re very open about J’s and my diagnosis and I’m passionate about educating the public, because prompt detection saves lives. That said, I in no way believe that it’s our obligation to do so.
In the United States at least, people seem to have the philosophy that they deserve to have access to whatever information they choose. This sense of entitlement leads to asking intrusive personal questions. “How tall are you?” “Why does she use a wheelchair?” “Why is his face that way?” Well, we didn’t ask to be born with our condition. We didn’t ask to have physical features that distinguish us from the general population. First and foremost we are individuals, not our diagnosis.
Are people trying to be rude? Usually, no. But are our height, weight, wheelchair use, scars, etc. any of their business? No!
Most days, I’m open to politely answering people’s questions because I do realize they’re not trying to be rude and because I do believe in the importance of education. But, I don’t always feel that way and that is ok too. The questions can get exhausting! My body does not exist as a teaching tool.
Just because you believe in advocating doesn’t mean that you can’t have boundaries of what you’re willing to tell who, and where. And if you don’t believe in educating others at all, that’s just fine! I think it sets a dangerous precedent to insist that we (or our children) always be willing to talk about our diagnosis. That removes some of our ownership from our bodies and our stories.
If our stories and bodies are not our own, what is?
Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with The Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom.
Marfan syndrome is a connective tissue disorder that affects about 1 in every 5,000 people, though only roughly half of affected people are aware they have it.
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