Musings of a Medical Zebra

A Zebra Speaks

Please don’t stare, just ask

As I mentioned in an earlier post, occasionally I ride around in a wheelchair.  This is usually because we’re doing something that requires a lot of walking. When I walk for more than 20-30 minutes on an average day, my knees hurt considerably. Sometimes I choose to just sit down and rest as often as I can.  Actually, I prefer to do this over riding in a wheelchair. I hate riding in wheelchairs.

We bought my wheelchair three or four years ago when I fractured my ankle. In general, crutches are a bad idea for people with EDS. In my case, they cause my shoulders to dislocate. They also cause my hands and wrists quite a bit of pain.  While I’m unable to push myself around in the chair very well because it also causes pain, it’s definitely an improvement over crutches. Power chairs are even better from a physical standpoint.

You’d think that I’d welcome both assistive devices, since they prevent injuries and unnecessary pain. Instead, I have disdain for them. Part of my problem has to do with accepting change. Just a few years ago everything was fine — I could walk as far as I wanted without pain, I had tons of energy, etc.  I realize things weren’t actually fine; it just seemed that way because I didn’t have any significant health issues.  Knowing that doesn’t really make it any better, though. Since my problems are fairly new to me, I’m still learning to accept that I need the chair from time to time.

Learning to accept the chair has been much easier than dealing with the stares I get while riding in the chair. I’m not exactly sure why people stare, but I think it could be related to my appearance. People are looking for something that’s obviously wrong. When they don’t see anything obviously wrong, it confuses them. They don’t ask why I need the chair because they probably think that would be rude, so they stare instead — forgetting that it’s rude to stare.

I think it baffles and irritates my husband (and friends) at times too. My husband notices the stares as much as I do, if not more often. A few years back — right after I fractured my ankle — we were in Walmart and I was riding in a power chair. I headed off to the grocery section of the store. My husband followed me. As we were moving along, he saw a middle-aged woman and her companion stop in their tracks. They just stood there for a bit and stared at me while I drove by.

Rather than staring, I wish people would just ask me why I need the chair. I would actually appreciate it. I can think of only one time that someone has asked me. It was an older lady, and the way she phrased the question was somewhat creative. She asked, “Did you just have surgery?”  I laughed to myself for a moment, and then went on to explain a little about EDS. I’m hoping she learned something that day, and that she’ll share what she learned. If more people would do that, perhaps fewer people would stare — thus making time spent in my chair more pleasurable.

This entry was posted on Wednesday, February 18th, 2009 at 9:39 pm and is filed under EDS Stuff, Misc. Thoughts on EDS & Chronic Illness. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.

2 Responses to “Please don’t stare, just ask”

  1. avatarSalóme
    2:26 pm on February 24th, 2009

    Hi Beth

    I was looking at the rare-disease-day photos on Flickr and reading about all the different diseases that the people on these photos have. I clicked the link below your photo and have been reading some of your posts. I think it’s great that you write about what you are dealing with. I’m sure it helps you to put all this into words and I’m sure it can help others as well – it’s always comfort to people to know they are not the only ones dealing with a certain disease or issue.

    I have a rare disease as well, Emery-Dreifuss Muscular Dystrophy. Like with your disease it leads to bunch of different problems. Muscles, spine, joints, heart, lungs, stomach,…
    But unlike you I have some visible symptoms. After I needed a surgery for scoliosis as a kid, I can not bend my back at all and I have a scar on my neck from the respirator that everyone notices. Most people just assume that I always sit straight because I was brought up well and many stare at my scar. My other big scars I usually hide.

    However, the main visual symptom is how skinny I am. I’m 22 years old and I weight less than 40 kg. I’ve been told by a specialist that it’s normal for people with muscle diseases to be very skinny. But oh, do people stare! I have had problems with weight (i can not put any on) since I was 8 years old and it always shocks me how rude people can be. Not only staring but even adults pointing and whispering. As a kid I completely stopped going to swimming pools and in the summertime I’d always wear long sleeves and trousers – even if the weather was way too warm for that. At buffets there is usually at least one stranger that urges me to put more on my plate.
    But the worst thing, the absolute worst is the school thing. At almost every school I’ve been in, secondary school, high school and even university – some people always assume I have anorexia. (Even in the high school where I ate a big plate of fries for lunch every single day! – what kind of anorexic would do that?) Sometimes some very strange stories have accompanied these rumors… I was lucky enough to get to hear some of the ones from high school..
    This makes me so so so mad. That people think that I’m doing this to myself is just something I can’t cope with (I am aware that anorexia is a disease too but I still hate the fact that people assume I have a mental disease). I’m so conscious about the fact that most people I meet assume this that it has effected my every day life for more than 10 years.

    So when people ask what’s wrong with me, I get so happy! I love when people ask and give me a chance to explain what really is wrong. And love the fact that they don’t just assume but take the trouble to ask. I don’t care if it’s a friend or a complete stranger. I want people to know about rare diseases and will gladly try to explain to anyone who asks.

    Don’t stare, please just ask.
    or… You can stare if you ask as well!

    Good luck with everything!

  2. avatarAnne M.
    4:35 am on January 11th, 2010

    I know this is a way old post but had to say something =) Don’t let the stares bother you! I know it’s easier said than done. Every time you get a stare just remember it could be worse – you could get the smirk, like I do. =(

    I have to use a wheelchair anytime I’m going to be very long in a store that has no benches. Not sure if it’s from the ice I slipped on last year or what. I HATE the smirk! The smirk is because they go to stare and notice I’m big and assume I’m so big I can’t stand on my own – um ok? Much larger people than I stand just fine. So they do the skim over smirk.

    Had to come read your blog after your comment on FB — no it’s nothing like I was reading – DEFINITELY!! I like your blog and am glad I could learn a little more about the now you. (um – hope that’s not as weird as it sounds!)

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