demystifying

I’ve decided that when I talk to healthy people about my illness, I’m going to start using MS as an analogy.  This is because most people have never heard of dysautonomia or Ehlers-Danlos, but they have heard of MS.  There are TV shows and movies with people who have MS.  They may even have a friend of a friend of a cousin who has it.

This is not scientifically sound at all.  But then human cognition isn’t really rational.  We like to think it is, but it’s not.  We are subject to many logical fallacies in our thinking, and have to train ourselves NOT to think like that.  I believe that this tendency is most apparent in our social thinking, and I suspect it is facilitated by if not exactly because we don’t tend to think about our social thinking.  How we “feel” about people is how we feel, not how we think.  We might sometimes use cognitive words to describe the states and decisions we make about people, but how much more common is it to discuss those in terms of feelings?

So when you’ve decided that it’s time to disclose your illness, you are left with the daunting task of breaking through ignorance and I think that one tool that can help is analogy – specifically, linking the disease to something that is familiar.  My hypothesis is that the more familiar a known disease entity is, it is more accepted it will be as valid.  Hence, “It’s like MS…” with the caveat of “except it’s specific to the part of my nervous system that controls my blood pressure, heart rate, sleeping, and eating. So I get dizzy and faint when I stand up for a while, I get really tired from doing very little, and there are a lot of things I can’t eat anymore.”  I don’t need to include “going to the bathroom” and “having sex” because really, they just don’t need to know that.  Well, the bathroom thing can be relevant if you’re trying to explain to a supervisor why you need frequent breaks or an altered work schedule, but I’m talking more about the less formal disclosures to coworkers who otherwise have no basis of understanding why you can’t come to “super fun lunch time” and think you’re just being snobby.

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  1. I got to that point years ago while still working and I’d just tell people I had really bad arthritis, but I’ve never had much joint pain–or joint pain that would be disabling in any way (hence thinking 50/50 on EDS before I saw the geneticist based on the generic, online descriptions). It was really irritating to have to lie, but I really had no other choice then since my EDS hadn’t been diagnosed.

    Well, I did get unwanted comments like “just take an aspirin,” but while I think people know MS, etc., etc. are diseases, they have no idea what they are or how they affect the body. Do they know MS attacks myelin and is therefore a neurological disease like we do? They might hear about a celebrity who’s doing fine or see an ad for one of the new MS drugs and then say “isn’t there a drug you can take since they have drugs for MS?” Sorry to sound so negative, but just speaking from my own experiences and such horribly rude and ignorant comments from family, former coworkers, etc.

    I just find we’re damned if we do and damned if we don’t. 😦 Nowadays, my diseases are more obvious in terms of how I look from head to toe or my limitations due to my vision and I just say I have a genetic disease and/or am visually impaired. I don’t have relationships like you do at work where people need to know too much, but no one says a thing after that–as if “genetic disease” or “visually impaired” is too much for them to handle. Whatever! Well, perhaps equating things to scary MS will be too much for people to handle, too.

    Argh, it’s so frustrating as I feel like I know what every damn disease is for whatever reason and if I don’t, I’m interested in learning about it to understand what that person deals with. Why can’t other be like that? OK, sorry for my rant!

    Reply

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