At the beginning of October, I gave in and downloaded Tik Tok. I didn’t want another app that would essentially suck up my time, but it was Eczema Awareness Month, and I wanted to reach as many people as possible.
Hence, my Tik Tok account went live.
I had no idea what I was doing. There is so much content and surprisingly so many other TSW warriors taking to the screen. Loved seeing so many wishing to share their daily struggles, whether it is out of helping others or helping themselves. I know, for myself, I use it for both — it feels good to help others but also feels good to know I am not alone.
I have posted a number of videos already, mostly my experience with Dupixent. There have been pictures of me in TSW sprinkled within those videos.
However, two weeks ago, I posted a video showcasing the trailer I made for my documentary, Preventable. In it, there are a plethora of photographs from when I was very ill. I am covered from head to toe in redness and ooze patches. I am bandaged. I am riddled with intense hair loss. You know, the usual battle a Topical Steroid Withdrawal member faces.
After two days, I soon noticed a warning set over my video. I thought it was a fluke, but it wasn’t.
“Some people may find this video disturbing”
Understatement of the century. Of course it’s disturbing. It’s incomprehensible. It couldn’t possibly be real because of the gruesome and graphic nature being displayed.
But it is.
If this isn’t an outrageous outcry for our community, then I am not sure what else could be. That we are living with something that other humans need censored from view, yet we are barely recognized by the very doctors who are not seeing what is right in front of them. We are too horrible to imagine on one end and too ill to manage without an ego being bruised on the other.
I say, let us be disturbing. Let us be a walking warning splashed over social media that isn’t found in a steroid insert. And that’s not to say I want to frighten people and scare them away from modern medicine, but I very much wish to awaken the public to understanding that just because someone has on a white coat and a piece of paper hanging on their wall does not mean they know everything. Even worse, it’s the ones who think they know everything.
My favorite doctors are the ones who don’t have all of the answers. The ones who are humble and speak to you on a human level. The ones who strive for wisdom by taking in the patient experience and synthesizing that information into a practice they are proud to run. Because the doctors who are in it for the dopamine kick of belittling a patient are going to be the ones disturbed very soon — we. aren’t. going. anywhere.
Continue to post your selfies. Continue to flaunt your ravaged skin. It makes a difference.
And one day, our posts will not need a warning for we will no longer need to share our pain. Like breadcrumbs, our flakes of skin will lead everyone down a trail of truth that is undeniable. That we are real.
I love you all. I see you — uncensored.