Musings of a Marfan Mom

The Chess Match

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I’ve got a pet peeve when it comes to Non-Marfs discussing Marfan syndrome.

Yesterday morning I came upon a book review through my Google Alerts, where Marfan was the subject. There were many things I took issue with, like the use of the word “disease” (it’s a disorder, a syndrome – not a disease – and even that subtle difference is important), but one in particular stood out. In nearly every paragraph, the author of the post used the words “sufferer” or “victim.”

I find this terminology, particularly when used by someone with no tie to Marfan, to be presumptuous and ableist. How dare they decide how those of us living with Marfan should feel?

Words like those suggest passivity and hopelessness. They paint a picture of people who are “less than,” struggling to eek out a mournful existence. Well, those people with Marfan syndrome ought to be pitied, they must lead such miserable lives. Why should someone who has no idea what it is to live like us get a say in how society views us?

I believe we can only speak for ourselves; I’d never try to say that my views are what everyone else with Marfan believes. But THIS Marf? There’s nothing passive about how I view myself and my relationship with Marfan. Instead, I think of it like a chess match. Ok, Marfan wins this turn in saying that I need to take medication. But, I’ll take his pawn by deciding that I’ll pick the medication that makes me feel the best and allows me to be the most active. Marfan may take my knight by limiting my pregnancy and childbirth options but I’ve got his bishop in figuring out how to build a family anyway. Sometimes the game moves along at an even pace, and sometimes I lose a few turns in a row. It’s not over yet, but you can bet that at the end I’ll be the one proclaiming checkmate.

I didn’t always feel this way, and it’s ok if you don’t either. If you consider yourself a “sufferer of ____,” that’s your prerogative. But whatever you do, don’t let someone else dictate who you are or how you should feel. That’s a power no one should have, particularly someone who has NO idea of what you’re going through.

What do you think? Those of you who have a chronic illness, or a love one with one, are you bothered by this sort of language?

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14 Comments

  1. What a great analogy Maya! Yes, I am bothered by that kind of language, but I think people saying those kinds of things are ignorant. I don’t think of myself as a victim and I don’t let Marfan define me. Just like most people, I do feel down at times, but overall I know I am a lucky person.
    Great post!

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  2. I just found your blog recently. My daughter has a rare form of dwarfism, which is also a connective tissue disorder (funny how a disorder of the same “type” can lead to complete opposites in physical appearance!). And I recently found out that a guy who I went to school with has Marfan – I never realised when I was at school, I just thought he was tall and gangly. Anyway I love your blog and I especially love this post! As a new mother of a child with a medical disorder, I’m learning so much so fast and am thankful for blogs like this that can help me see things from a different perspective.

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  3. I am bothered by the kind of language you mention, but more as a writer who values precision of language than someone with a chronic disorder. The “disease/disorder” problem bothers me as someone who wants accuracy in language…although I do sometimes tell newbies I have a “bone disease” because I think “disease” is a more concrete and familiar word than “disorder.” I can’t stand the use of phrases like “suffers from ____” or “is confined to a wheelchair.” They are inaccurate and pompous; the writer assumes he/she understands how a person feels about his or her condition, assumes that the person must feel like a sufferer or feel confined.

    For the record, I also hate the words “ableist” and “ableism,” not because I don’t support the sentiments behind them, but because in general, I dislike jargony neologisms! I don’t like these words the same way I don’t like people saying “such and such *impacted* me.” I guess “ableism” is as good a word as any for describing how we are made to feel “less than” for having physical limitations, but I don’t use it.

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    marfmom Reply:

    I understand! Do you have another way for describing the concept of ableism, or is it something you tend not to discuss?

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    Ellen Reply:

    That’s a great question Maya. I don’t discuss “ableism” that much if what we mean by that is outright discrimination against people with disabilities. I know that happens, but I also think we’ve come a long way in that regard (esp. compared with developing countries where terrible exclusion and misinformation still plagues many people living with disabilities). I am much more aware of the assumptions–often unthinking, sometimes well-meaning–that others make about people with disabilities, rather than clear discrimination. The use of phrases like “suffers from…” is one example of that; it assumes suffering that may not be occurring. As a mom, I’m also very aware of the unspoken expectations our culture has for moms to be able-bodied, to have the physical ability and energy to cook dinner every night, garden, exercise with their kids, keep the house clean, get the kids to school on time despite icy sidewalks, etc. (Don’t even get me started on parents who take the handicapped spots at school on the snowiest, coldest mornings. Grrrr…..) The vignette you describe here–having to carry an infant seat and a tantruming toddler–is a great example. That would be a difficult situation for any mom. For you, it was dangerous. For me, it would have been impossible. How great that the nurse recognized you were struggling and helped…but that doesn’t always happen. Or the well-meaning lectures some people like to give about modern parents’ over-reliance on strollers. For me, my kids’ strollers were a mobility aid and a necessity, because I could neither carry them nor chase after them in public.

    So to answer your question, I write a lot about those assumptions (and how even I have trouble letting them go!), without giving them a specific name.

    That was kind of rambly but I hope you know what I mean!!

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    marfmom Reply:

    That does make sense! Thank you for explaining further. (I was using ableism in the more subtle form you discussed at the end; I call outright discrimination just that.)

  4. Good post. I don’t care for being called a victim or a sufferer at all. I think it is a battle for me to portray Marfan as life changing but not life destroying necessarily. Sometimes it is hard to have Marfan, but most days I feel like I’m pretty much like everyone else. We all have our limitations and Marfan is just a specific set of them.

    An example of what I am talking about – though I am not happy to have to birth in a high risk situation, having c-sections, etc, but when I look at my friends, I have those who have struggled with infertility or are still struggling, those who have had gestational diabetes, pre-e, and other complications, and many who have had c-sections. When I think about this, and my completely uncomplicated pregnancies, including one with twins, it really hits home how no one is “able”. NO ONE is unaffected by life.

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  5. My husband’s family has a disorder called HHT (Hereditary hemorrhagic telangiectasia). This sort of thing happens with their family all the time. There is no medication or anything major that can be done about it. They all just live their lives like normal people (within reason of course). My husband has not shown signs of it yet (it presents it self in the grown up years), but he is a carrier of it. My children could have it. If they do, they shouldn’t be treated like they are infirmed because of it. It really annoys me when people that aren’t affected by something try to word books and articles about something. They have never felt they way those people or the people closest to them feel about it. They have no right to use the language they use. My grandfather always said never pass judgement unless you walk a mile in the other person’s shoes. That applies to this. If you have never walked in their shoes, don’t use judgmental language.

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  6. I’m going to have Wyatt read this one Maya!

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  7. For starters Maya, Lee also HATES when people call Marfan a disease. I have witnessed him shouting at the TV (something he mocks me for LoL). Secondly that was an excellent anaology. I know you would be saying check mate!

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  8. What’s the difference between a disease and a syndrome? Is it that the word disease carries more baggage?

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    marfmom Reply:

    Good question! It actually has to do with diagnosis. A disease, whether it be influenza or cancer, has a set of symptoms and a progression that is more or less the same for anyone who has that disease. With a syndrome, there is a list of symptoms and someone with the syndrome only has to have a certain number of those symptoms to have the diagnosis. There can be great variability in both the symptoms and progression between people who have it.

    It’s very problematic when physicians approach the diagnosis of Marfan syndrome as though it’s a disease. I have heard way too many people tell me they were delayed in getting a diagnosis (and therefore treatment) because their first doctor told them they couldn’t possibly have Marfan because they didn’t have one possible symptom, like they weren’t thin, or weren’t tall. So, that’s why I’m a stickler for the correct terminology. :-)

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  9. I’m chronically depressed, and am currently dealing (or trying to) with postpartum depression.. and I LOVE the chess match analogy! My depression currently has me in check, but I have the resources to not let it become checkmate. :)

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    marfmom Reply:

    You go!!! :)

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