I’m going to discuss something that I get rather passionate about, and I hope that you’ll both hear me out and be willing to engage in a friendly conversation about this if you do disagree.

Some of you may have read portions or all of the conversation on one of the Marfan forums yesterday, where someone mentioned that they found the term “Marf” to be insulting, and others then disagreed. It got heated at times. I’ve browsed the responses but have not read all of them.

I ruminated on the issue much of yesterday though, and I realized I wanted to write about it. I want to direct my post today to the “unaffected” parents. So many of you are my friends! I admire you, and those of you with older kids, I look to see how you handle some of the pre-teen issues that I already worry about with J. I also feel for you, because I think that in some ways it must be difficult to be thrust into the Marfan world without necessarily expecting it. Please, please don’t take offense to what I am about to say.

The term Marf? It has nothing to do with you. I am all for parents and self-advocates (aka – those of us with a given diagnosis) sitting down together at a table for everyone’s voices to be heard. We are ALL affected by Marfan in some way, and those are all valid experiences. But what we Marfs call ourselves, or don’t call ourselves? At some point that becomes a personal decision. When your child is small, by all means call them a Mighty Marf, or a child with Marfan, whichever you prefer. But when your child is old enough to have and express an opinion, that opinion is what you should go by.

Person first language is NOT universally accepted in the disability community. (For those that don’t know, person first language is the idea that the diagnosis must always come second: person with Marfan syndrome instead of Marf, or person with autism instead of autistic, for example.) I feel like in many ways it is the non-disabled/ill community trying to decide what is politically correct for the disabled/ill community. Is it polite to use people first language in the absence of knowing anything else? Sure! But do not try to tell an affected person that that is the language they must use to describe themselves.

I understand that as parents, our children’s pain is our pain. We don’t want our kids to stick out. I hear many parents say they just want to treat their kids like any normal child, and I read that sentiment several times in yesterday’s forum discussion. And because of this, unaffected parents (like mine) can be reluctant for their child to get involved with the Marfan community. They don’t want their child to see themselves as disabled or sick, and they don’t want to scare them with what “those other people with Marfan” look like. But, there are a couple of issues with that.

1) We AREN’T like everyone else. No matter how hard you or we might want to be normal (whatever that means), we’re not. Marfs tend to stick out in a crowd. We can’t do all the activities most other people can do, either. We KNOW this, whether we live in a family that acknowledges this or not.
2) Identifying with the Marfan community does NOT mean that we consider ourselves disabled, sick, incapable, or less than our peers. Quite frankly, I was offended that anyone would assume that.

To me, and to many of the teens I work with, the term Marf is a point of pride. It means strong in the face of adversity. It means being capable of handling things that many others are not. It means having a certain elegance about us. It means being different in a positive way. It means that you are HOME, with people who can understand you on a level that oftentimes your family can not. I don’t mean this as a slam, but unaffected parents, although you are MANY things to your children, this is a part of them that you can not be. That is not a bad thing or a good thing, it just is.

Not everyone with Marfan likes the term Marf or sees the definition in the same way. That is ok. I am a firm believer that an individual should choose how they want to be labeled. I will say this though. It has been my observation that the people with Marfan who are the most self-assured are the ones who grew up in families where they knew that it was ok to be a part of the Marfan community. That doesn’t mean that they CHOSE to be “all Marfan, all the time,” but rather that they knew there was no shame in reaching out in whatever way felt right to them, or in self-identifying in whatever way felt most comfortable for them. I know that for ME, it was difficult when my parents were hesitant for me to be involved with the Marfan community. I wondered if they were ashamed of me. (Of course I know now that they were not, but at 13, I wasn’t sure). When I attended my first conference, it was freeing. I felt at home for the first time in a way that I can’t really describe.

This feels like my relationship with the autism community. I try to be an advocate for M. I read blogs by autistic adults. I try to approach things in what I think is the best way for him. But ultimately, I don’t know what it’s like to be autistic and so I see my role as preparing M for however he wants to handle his autism. If it becomes an integral part of who he is, great. If it’s something he sees as not part of him at all, great. Until that point, we’re open about it as a family and I try to expose him to opportunities to be around other people like him.

So, I guess all this to say, please don’t be afraid of the term Marf, or the Marfamily. This sense of community can do more to help your child feel healthy and capable than you might think. And if ultimately they find those terms to be negative that’s ok! At least they know their choice is their own.