This is a post I’ve been mulling awhile. I had a conversation awhile back, during which the question was raised whether we, as people with Marfan, have a responsibility to educate those around us. Of particular note was how we raise our affected children to address this.

Marfan syndrome causes most of us 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). I challenge you to find a handful of Marfs who have not had strangers comment on their bodies. I’m not sure I can even name ONE!

Now, I spend a great deal of time in various 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. That said, I in no way believe that it’s our obligation to do so.

We didn’t ask to be born with Marfan. We didn’t ask to have physical features that distinguish us from the general population. In the United States at least (because this is not a phenomenon I experienced in Portugal this summer, where I was much taller than everyone else, or in Brasil, where I also stuck out), 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. You see this among all sorts of groups, including transracial adoptive families, ethnic minorities, and same-gender parented families.

Are people trying to be rude? Usually, no. But is our height, weight, hair, family makeup, 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.

I am raising J to know that how he does or does not talk about his Marfan is his business. As he gets older, he will have veto-control over what I write about him. He will decide who he tells, and how. He is under NO obligation to tell strangers who comment on his body about his diagnosis. And honestly? If they’re rude to him, he has my permission to be rude back (I’d prefer him to be polite, but we’re human and allowed to have bad days!). I think it sets a dangerous precedent to insist our children always be willing to talk about Marfan. That removes some of their ownership from their bodies and their story.

If our stories and bodies are not our own, what is?

J, proudly showing off his Marfan Foundation bracelet