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What Does CF Even Look Like?
Yesterday I wrote a column about what it means to “look sick” or “look Deaf.” There are a surprising amount of CFers with hearing loss, and a great many others with secondary disabilities or illnesses, and each one seems to come with a certain stereotype in the public perception of what they should or shouldn’t look like.
I never mind being told that I don’t look sick (technically that’s a compliment?), but I never understand why it needs to be said at all (especially when clearly stuck in the hospital or said by healthcare professionals). Overall though, it’s always coming from a nice place, and I always love a good compliment!
But I have been told I don’t “look Deaf” more times than I can count, and it always makes me want to say: “What does Deaf look like?” I know the stereotype of what CF “looks like” (normally relating to posture, weight and height), but I also know many who defy said assumptions. I only have a couple of clubbed fingernails, not all of them. I am definitely on the smaller side with skinny ankles, but I also have hips. My spine is compressing over the years, but I am not particularly barrel shaped (guessing constantly engaging the muscles for dance posture over the years helped a little with this one).
We don’t all fit the bill as it did in a medical book 20 years ago, and I wish there was more education on that overall.
Question: What is one way that you “defy” the typical CF or sick stereotype?
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2 Replies
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To be honest, I would not even know if there is a typical cf or sick stereotype. Most people out there don’t even know about cf, let alone that they would have a standard image related to that in their minds. Which is good, because whatever image they would have, it would be wrong.
So I would not know if and how I do or don’t defy or conform to such an imaginary and faulty image. Nor do I care much about it. I don’t have any image about cf. It sounds like a lot of effort even thinking about it, and very artificial and superficial too. I would even go as far as stating that in fact, I don’t feel like “having” cf because it’s not important enough to create a feeling that I would pick up. Relative to the things in life that are important, cf really doesn’t count for much in my experience. My body has its normal needs and a special manual which I know and respect. Like any one else, that will work for as long as it works and then the body will fail – so be it. In my form, I seem limited in space and time. Beyond that, there is the unlimited unknown. Trying to know more amounts to suffering.
I try to connect to everything and everyone on a basis of “same-ness”, and I find most so-called differences rather unimportant and boring. On a being-level things like the body, mind, convictions, conditioning etc. do not count for much. What we all share is so much bigger than the superficial differences of the form – we all share the same aliveness which is the miracle of nature (if we would only see it). We should not be so preoccupied about how we look and how we come across or about our bodily (dis)functions. Remember: Vanitas vanitatum et omnia vanitas.
So, I don’t think about stereotypes because they are not real and form no basis for any meaningful connection in life at all. This is the most comprehensive way I can defy the cf/sick (and any other) stereotype: not believe in it and know that it is not real and not important. It is a figment of the dysfunctional egoic mind. If you have such a figment, the sooner you get away with it, the better. It’s trouble and it severely limits your perception of aliveness.
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@bailey-vincent I think I just look “healthier” than people generally expect. On one hand, as you said, it’s nice because I don’t want to look sick all the time. But it also feels really invalidating. I’ve even had a doctor approach me while inpatient and say, “You don’t look like you should be here. Are you sure you’re sick?” It was obviously meant as a joke, but I didn’t find it funny.
Sometimes it feels like if we don’t fit the stereotypes or someone else’s idea of what a “sick” person looks like, we have to prove that our symptoms are real. We aren’t taken as seriously as someone who looks as awful as they feel. And that is sooo frustrating!
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