As an individual with Marfan syndrome, you've most likely had that awkward encounter with a coworker, classmate, friend, or even family member where you have to explain your condition. Sometimes, even after you've disclosed the information, they just seem to forget that you've actually got a condition that can affect nearly every aspect of your life.
As a 20-something, I've been blessed with a few really great friends who know me and know what I can and cannot do. They give me piggyback rides when I just can't walk any more (that really happened), or they find activities we can all do so that I'm not the “odd man out.” Most of my family has Marfan syndrome as well, so we laugh about our idea of cardio (walking around the mall), and we take care of each other when needed. I am so grateful for these people in my life, and I'm sure you have a few yourself.
But we also have to deal with the people who just don't understand.
“Hey, do you wanna go to this cardio class I just found? It's a great way to get in shape!”
“Hey, can you help us move to our new (third floor) apartment this weekend?”
“You're too young to have back pain!”
“You need to eat - you're too skinny!”
“Why are you so out of breath? You need to work out!”
“Your kid should be in sports - he/she would have so much fun!”
Of course, these are all innocent-enough statements; these people are not trying to tease us or our lack of abilities. But what is does is throw the idea of “normal” back in our faces, and makes us feel a little less capable.
So what do you do? How do you make people understand, and how do you handle it internally when they don't (because you know this will continue to happen throughout your life). You have a couple of choices:
- Avoid all conversation about your condition. I myself have done this in my friendships and work life just because I don't want people to look at me differently. However, this way doesn't last forever because, eventually, something will need to be said if you are hoping to stick around for any length of time. When I finally do have to tell people, they either feel really uncomfortable (natural, given that I've withheld some major information) or they just forget. Usually, when I don't share my condition, I end up feeling like a jerk because I just have to simply turn things down (“No, sorry I don't go hiking), or because it sort of blows up in my face when I do eventually tell them. Either way, I've found that this option doesn't work for me.
- Get emotional when someone is insensitive. Once again, I've done this before. When I've been asked (for the 4th time) why I can't join a gym, I get a little upset. But does this do me any good? Not really. If you've found yourself reacting with negative emotion, maybe it's time to break that cycle. This reaction tends to make people remember my condition, that's for sure. But not in the way I want them to remember it. I don't want people to be afraid that I will burst into tears at the slightest mention that they went snowshoeing or can run a mile. Honestly, emotion is natural and feeling upset about this condition is to be expected, but I don't have to be bitter or lash out because someone doesn't get it.
- Explain your condition, but accept that you're going to have to repeat it. Sometimes, I explain myself and then have to explain myself again. With a little more experience under my belt, I’ve started explaining that I have a connective tissue disorder that affects nearly every way my body works. I find this way to be a little over dramatic, but it gets the point across, and people tend to remember it. I also know that the people who I have to keep repeating it to are not the people I can rely on to be there through thick and thin- and that's ok. People have their own stuff going on, and I can make room in my life for people who truly understand.
- Accept that some people will never understand. When you've got a condition like Marfan or Ehlers-Danlos or Loeys-Dietz, you're often subjected to standards of normality. “Oh you're tall, you should play basketball,” or “It can't be that bad, you look fine!” It's not your job to make everyone understand - and it's not worth the emotional or physical reaction in most cases. Sometimes, I meet people who I know will just never understand, and I don't even bother telling them, or I just give them a quick rundown. Why? Because I don't want to waste my breath. I have this condition, and I don't really need to defend myself. Sometimes, it's just easier to not engage.
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