Musings of a Marfan Mom

The Marf Question

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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.

My Marfantastic Marf Baby

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12 Comments

  1. I didn’t get involved in the online discussion. Frankly, I thought it was a silly argument to have. But upon reading your blog, I thought a bit more about it and remembered that language shapes thought. What we call ourselves is important. I decided to share some of my thoughts here.

    Personally, I have always preferred person first language but sometimes it simply becomes unwieldy. I have never liked the term “Marf” But I have no real reason. I just don’t like the sound of it. It’s just linguistically unpalatable. But I do see its value as a term of art in discussions within the community. But once it is removed from that context, it becomes problematic. The reverse also holds true. I have heard epithets which were generally used to denigrate a group used by that same group as a term of affection and community. (I’d give examples but they are all words I don’t care to see in print.) So it is possible for a word to be both an insult and a term of affection. As is the case in most of life, context is everything!

    Speaking to my personal opinion, I will encourage my son to claim his identity as a person with Marfan’s or a person with a disability. he can make his own choice about any other names he will allow people in his life to use, and I will honor his choice. But I will also defend him from people who use the very same word as an epithet or as a way to diminish him or to force him into a context that serves their purposes.

    I agree, Maya that we shouldn’t be afraid of the word marf. It has a great power to aid in the creation of community. But as in everything we must always respect each others opinions and wishes. Just as “naming” things can create intimacy and community, the misuse of language can also destroy. There is much more to say on some of the other comments you made. (Like reluctance to get involved with the Marfan community, you and I are certainly in agreement there! I LOVE my Marfan group friends here in Dallas and those like you that I only know online!) But, I have spent way too much time at the keyboard this morning. So, I’m off to do chores! Be well friend Maya!

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    marfmom Reply:

    Thanks for your comment! The idea that a word can be used for both good and evil is one that I think of a lot, as many terms in the medical community have become negative – where once they were neutral or positive – such as handicapped, disabled, even special needs. I have never been called “Marf” in a derogatory manner but I know that it could be used in such a way.

    I just believe it is so important to each have the power to decide how we’d like to think of ourselves and what terms we’d like to use to describe ourselves. I think this is especially important in the disability/illness community, when there are so many things that can be outside of our control.

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  2. As an “unaffected” parent, I agree with everything you said, Maya! Great post!

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  3. I love that you talked about this and so wonderfully. We are proud to be part of this Marfamily but at the same time I can understand why people do not like the term. It is a personal choice and respect each other’s decisions as such.

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  4. i have raised a daughter with Marfans , i know what it is like, i never treated her special because of it. she grew up know her limits ,and what was going on with her body, dont keep secreats from your children,they will find out later and be hurt from it.i was told when my daughter was 18 months old, have delt with it all theses years,would not trade it for nothing but she is 26 now and would love to have a baby and cant,she is married to a great guy, hope this helps any, if you have any questions about raiseing a girl with marfans email me maybe i can help gammies_girl@yahoo.com

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  5. As a teen with MFS I can’t tell you how much I love this and how well written it is. And, I’m glad you chose to write about this because I’ve often wondered about whether or not to refer to other people in the MFS community as Marfs. I guess there really isn’t one answer to that.
    For me personally, identifying myself as a Marf gave me a sense of pride and belonging. I can’t even really adequately explain the reasons behind this, it’s just how it makes me feel. Having spent many years feeling very alone with a disorder nobody around me knew anything about I became painfully isolated – until I got connected with the Marfan community – which, to be honest, changed my life entirely and for the better. I took the word Marf as sort of a badge of honor, or the code word to a secret club only those in the MFS community have. And most of all; I’m proud to be able to identify with the courageous, inspiring and strong people in our Marfamily, I’m proud to call myself a Marf because to be among those incredible people is something to take pride in. We face so many things that other people don’t and through it we adapt, we persevere and we support each other no matter what. To me being a Marf signifies all of those things somehow, in one four letter word.
    All of that being said I do respect the opinions of those with MFS who don’t like the word and don’t wish to be referred to by it. I believe that those with MFS should be the ones making that decision for themselves and J is lucky to have a mom like you who’s willing to let him do that.

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  6. I saw the discussion online and read some of it — never commented though. I am the “unaffected” parent in my house – as you know Maya – the Hubby and the oldest child Grace do have Marfan Syndrome.

    The term “Marf” — I dont really feel strongly one way or another. Sitting and thinking about it, I refer to the Marfan community that we are starting to join as the Marfamily or Marfriends. When I am talking about the syndrome or its symptoms and challenges, I say “Grace has Marfan Syndrome”.

    Honestly, any term used to describe anyone can be used in a positive and negative way. I mean — how about the term “unaffected parent” — cause I will tell you that I am FAR from “unaffected”. I am just simply not the person with the diagnosis but I am dealing with Marfan Syndrome and its affects in all sorts of ways. So should I be offended when someone calls me that? No. Just as Grace and the Hubby shouldnt be offended by the term Marf. They dont have to use it in their own vocabulary if they dont prefer it but when used within the community, its not meant to be negative; its meant to identify as part of a specific community.

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    marfmom Reply:

    I soooo agree with you about unaffected not being a good term. I’ve been trying to come up with one that means “does not also have Marfan” to use in its place, as that’s rather cumbersome. At conference we changed the “unaffected” siblings workshop to the “Marfriends” workshop.

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  7. Great post. As a diabetic adult, I feel the same way about “labeling”. It’s ok to refer to me as a diabetic, and not as a person with diabetes. Community is so, so important for support and empathy at times. It is a powerful tool. Why do people care so much about the “labels”??

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  8. Maya,
    This is so well written. It’s funny, because I did a lot of thinking in response to the thread as well but didn’t join the discussion. I grew up feeling so different, the youngest of 7 but the only one who didn’t look just like the other siblings. When I was first diagnosed at 21 I didn’t want to be identified as someone with Marfan Syndrome, and I especially wouldn’t have liked the term Marf. I didn’t know anyone with it, the only pictures I had seen were in medical textbooks and the worst cases, and the only time I heard of it was when someone told me about someone with Marfans who had died. So most of the time I lived in denial and then would have major anxiety whenever I went to the doctor and had to face the reality of Marfan Syndrome. However, alternating denial with bouts of extreme grief and anxiety isn’t a healthy way to live and especially didn’t work well after I dissected. 25 years later I can say that I’ve learned to integrate having this syndrome into my life. It doesn’t define me, but it definitely shapes me. I loved going to conference and finally finding the family that I looked like. They understood the issues, they understood the fears. And as my acceptance grew, so did the sense of openness about my condition. I happily will call myself a Marf now and I love your marfilicious and marfantastic t-shirts. I know there are others who are ok with having marfan syndrome and still don’t like the term Marf and that’s ok too. The non-negotiable for me is being part of a community where we can celebrate how we are unique and support/grieve with one another when our uniqueness makes life tough. Thanks for writing! (maybe it’s time for me to post something on my blog again)

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  9. I really liked this post. This is almost exactly how I feel about being called “diabetic” or a “person with diabetes” (PWD). I know a lot of people who prefer PWD. I don’t really care either way, but I do think that it is MY choice. When I was a kid people around me spent a lot of time trying to treat me like a “normal” person without any limitations, and I understand that sentiment to some degree. But, I have since realized, that treating me like a normal person made me feel ashamed when I wasn’t having a “normal” moment. When I had to take shots or eat when other people didn’t or when my blood sugar was low, I would long to be normal and feel bad that I wasn’t. It wasn’t until I embraced diabetes as part of who I was that I really felt comfortable in my own skin. Being part of the diabetes community has empowered me, and owning diabetes has given me way more control of my life and the capacity to lead the life that I wanted, than trying to pretend I was “just like everybody else” ever did. I hope that makes sense. Anyway, I just wanted to say I could relate to this post a lot!

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  10. Excellent, excellent post!

    I also saw the discussion and I can see both sides, and I was ok to say “unaffected spouse” before our diagnosis came down when it was “just” the Hubby as the only Marf (of course you know we had our suspicions…).

    Now that we know I & the brood are also affected I can relate to the flip side of BEING the Marf. And you know what? It is such a relief to be able to say that now all those things through the years that seemed so weird actually MAKE SENSE! I have Marfan. I am affected by Marfan. Marfan syndrome affected. I AM a MARF! BUT…it is not all that I am.

    I am a Mom, a Grandma, a computer geek, a music lover, a cook (although not so much any more), a geology & genealogy buff, a friend, a co-worker, a grandma of a CDH Cherub angel, and I am a Marf. It is 1 part of me, it is not all of me… And that is ok.

    For those who are not comfortable embracing the term, I’m ok with that as it’s just where you are now. We are one big Marfan Family and families disagree, but we love our family anyway! <3

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