My life would be so much easier if I would use them but I just can’t get over the stigma of it and fear that someone I know from work would see me. I work in sales and have mostly keep my EM a secret. I’ve really only shared with a few that I work with regularly but even they don’t know much of the details. I’m fairly young 51 (glass half full) and I already get looks if I use my handicap tag at the big box stores. Shopping always causes a flare, the walking but even more so, check out! How do you get over the embarrassment and stigma of using one.
I used one just yesterday in fact! I’m an 18 year old who looks completely normal yet I have em, the best thing for me is to just focus on the shopping and know I’m never gonna see most of these people again, and if someone asks about it I just explain I have a rare disease and spread awareness. However if you’re uncomfortable with that simply say you aren’t comfortable sharing but that a motorized cart helps you get your shopping done pain free.
Well that makes me feel a little better. Ha. Ha.
I had a networking meeting today and one of my realtors that knows I have issues, noticed my feet before going in and said wow, your feet are red, is that from the issue you deal with. I just say, yeah. Then on the way out when they were a lot redder and swollen one of the new guys, says wow, did you sunburn your feet. I’m just like, no, it’s a medical condition. No one really wants details. Anytime I’ve started to explain I just see their eyes glaze over so I say as little as possible anymore.
Yeah I get the people having little interest, a good thing to get their attention is ‘yeah I have a disease rarer than being struck by lightning’ someone once told me I better not go outside and get struck by it then haha.
I have EM in my hands and knees. They swell up and get very splotchy. A lot of the time I have to hold my hands up like I’ve just scrubbed in to perform surgery. When people comment, as they always do I just tell them I have a rare medical condition. They are appalled at commenting, so I make jokes to help them (and me) feel better. Like, these are my iron man hands and they are powering up! After that instead of saying erythromelalgia (I also have lupus, fibromyalgia, and other issues) I tell them to Google burning man syndrome. It’s easy for them to remember and spreads awareness. I don’t blast to everyone that I have disabilities but I don’t hide it either. If people do ask, I also say that they are probably dealing with things that others can’t see just like I am. I find (I’m a social worker) that joking or being light hearted has always served me well. Also, I’ve used the carts before (I’m 44) and I’ve never had anyone be rude. Why put yourself through agony when they are there to help us? Don’t get me wrong, what we are dealing with is not a joke, but people are more understanding when we make each other comfortable.
I don’t think there’s a stigma to those carts (unless you can’t steer one and knock over displays all over the store!). They’ve been around too long at this point and have been used by too many people for too many wide and varied reasons.
Heck, I’ve used one periodically since I broke ankle and fractured my leg in my early 30’s. My break was so bad I was in physical therapy for more than 2 years and used a cane for more than a year. This was 25 years ago, I stared shopping at stores that offered the carts because they weren’t everywhere at that time. I’ve used a cart again after a terrible bout with pneumonia, and again during the 18 months I suffered with Cymbalta Withdrawal Syndrome and had leg/hips cramps so badly I couldn’t sit up right in my office chair.
I think of those carts as a valuable service offered to me, not something to be ashamed of or something with a stigma attached. I’ve never had anyone react to the cart in a negative manner, if anything, people offered to help me while I was shopping!
I think the carts are great! I think you should make use of them whenever they’re available.
azurelle
Tracy, thanks for the advice. Sounds like good advice.