People are usually very kind when I explain to them the impact mast cell disease has on my life. I tend to get sympathy, which I don’t really want, as well as empathy, which I do really need, and sometimes I get some great (and not so great) advice.
The other day I took a photo of a reaction I was having to, of all things, my new Medic Alert bracelet.
Ugh. My mast cell disease specialists encouraged me to get one and wear it at all times in order to alert first responders to my very special needs. Some of us list specific allergies and complications while some of us (like me) just put “MULTI ALLERGIC” because there are too many things to list.
I also keep a card in my wallet that has more information as well as an emergency booklet for, well, emergencies. My phone also has all the pertinent information including phone numbers for my doctors who know everything the ER would need to know.
What they couldn’t have known, and neither did I, though, is that I would react to every medic alert bracelet I have tried. Oh, the irony, right? Different metals (except gold) all seem to trigger me and it’s why I can’t wear much jewelry (except gold) these days.
I decided to share the picture on Reddit, in order to get some feedback and boy, did I get some feedback! I also got a lot of good advice which I appreciated, like…
“Get a gold one!”
“Try coating it with clear nail polish!”
“Just get a tattoo!”
One person even suggested getting a tattoo on my face but that’s silly. For one, I wouldn’t want my private medical info tattooed on my face and two, I can’t risk getting a tattoo anywhere now because I might be allergic to the ink.
The same goes for clear nail polish. I can’t wear it or use hair dye or most anything with synthetic or even many organic ingredients.
I was already considering investing in a gold medic alert bracelet (and they ARE an investment given the price) when a couple of paramedics chimed into the thread to let me in on a little insider secret. Then a few more first responders joined in to agree with them.
“We don’t even look at those so they’re pretty much worthless anyway!” was the gist of their message to me.
Um. Excuse me?
What do you mean you don’t bother to look for a medic alert bracelet?!!!
What if you’ve never heard of this rare disease and don’t know what signs to look for since some of us don’t go into anaphylaxis but have other symptoms that need very careful handling due to the nature of this disease?? What if you need to know that some of us are allergic to common medications you might use, including epinephrine?
I didn’t bother to get into it with them and my post was removed after about 45k votes up for some reason (Reddit is famous for that), but it left me a bit in shock thinking that so many of us out here buy and wear these bracelets while the very people we are counting on to help us in our most desperate moments don’t even bother to look at them.
Oh well, at least I know now.