I wrote about this subject before, but today I came across this website that made me laugh out loud… mainly because their message spoke to me. Take a peek at these sympathy cards by Emily McDowell, here’s one on the right —>
It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. And I am the kind of mom who is flipping DESPERATE and will try just about anything, yet some of the emails with suggestions I’ve gotten over the years border on the absolute ridiculous, bordering on insanity. Want an example? “Burn his skin, it will regrow without EB” someone told me once. I have many more examples, but I will spare you. Trust me, this stuff just can’t be repeated.
Some advice, on the other hand, is so bottom of the barrel basic they leave me wondering if they think I am a moron. I still giggle when I hear of people suggesting “lots of water” or “prune juice” when I describe Nicky’s serious constipation problems. Nah… water? Why did I never think of that before? At least it’s good for a giggle, which I can certainly use these days.
I suppose the main issue that I struggle with day in and day out is the fact that I want to convey the truth that Nicky is in pain. Nicky goes through stuff that can’t easily be solved. What works for a “normal skin” person, just does not work for Nicky. I just want Nicky’s pain to be understood and acknowledged, because is real, it’s important. And not only Nicky’s or all EB patients, but everyone with any sort of illness, even mental illness. Depression is real, physical pain matters and when it’s minimized it’s truly a disservice to ourselves. And by that I do not mean that it’s okay to wallow in pity for ourselves. That is not good either. When someone is in pain of any kind, lend a helping hand, a crying shoulder, a kind word. Ask them “what can I do to help”, I promise you that helps more than any advice in the world, it really does.
If I can leave you with any message today, just know that Empathy Matters. It really does.
Love and Light,