Why yes. Yes I do. Trust me if a celebrity has what I have someone has called or texted it to me within an hour of the Mighty releasing the info.
So some thoughts when a celebrity who already does: life, glamour, humor, and messaging so much better than you now does your disorder better than you…
Petty? Sure. Absolutely. Have you listened to the podcast? Read the blog? Petty and snarky is kind of my jam.
Last year Lady Gaga came busting out of the chronic illness closet with platform crystal encrusted armadillo McQueen boots. Did you know Lady Gaga has Fibromyalgia?
See that is the question. That is how it is phrased but what my little opioid crisis fevered hamster on endless cycles hears is: Did you know there is this super famous person who not only manages to slay her career but stays a size 0 still dances and sings and has YOUR SAME disorder but does it in heels??? I told you I’m petty. You were warned.
Now Jameela is on Instagram stretching her cheek skin like a caramel goddess chipmunk and twisting her exquisite limbs into yogi sighing proportions all over instagram. All I can hear is look she is twisting her arm like you and she’s not screaming. You scream, and by the way she can carry off bangs.
Do these women have the right to scream their message from swarski microphones from perfect lipstick mouths? Yes, of course. It would be nice if they mentioned there are stages to disorders. That some people are more or less effected. When an invisible illness finally gets a spokesperson I would rather they not blithely dislocate with a smile. A nod to those not rocking the disorder would be nice.
In all seriousness they have to know that Ehlers Danlos is the first thing doctors google when you tell them. If now their visual is oh you dislocate but it doesn’t hurt. Or you have stretchy skin it is going to make my ER and disability visits suck. I get it they work they need to show they can work. Or hey, maybe they are affected differently.
I will say I have both. I use a wheelchair. When my elbow dislocates I scream from a mouth that might have seen lipstick in the last month. When my skin stretches it also tears (must not have had the new oxygen facial). My tibias often come out past my knees and I can spend weeks in bed watching a clock to see when 20 minutes have gone by for my meds to take a slight edge off what I will blithely call seventh level of hell pain.
I would be shocked if Jameela read this (If you are reading this I ADORE you for all of the body positivity work you have done) PLEASE PLEASE when you talk about Ehlers Danlos talk about the differences. Just because you are capable of work and leaving the house remember there are some of us struggling to leave our beds or brush our hair without dislocations. You were great at showing the other side of diet teas maybe lift the veil on the not so fashionable side of chronic illness. Or hey, come on the show.