Why a podcast? Why not a podcast?
I have started a podcast called, “Scleroderma in 60 Seconds”. I came up with the idea over a year ago and it’s taken this long to figure it out. The first episode is dropping in the next week. I’m a bit of a perfectionist and I’m almost there.
Why a podcast? Scleroderma is no joke. It’s a progressive, degenerative illness that often results in death. When I was diagnosed, they suggested that I get my affairs in order and pick out a dress. I have trouble picking a pair of black yoga pants every morning. I was not about to try to pick a dress for all of eternity, so I decided that scleroderma wasn’t going to kill me.
I know I am not powerful enough to prevent my own death but the right amount of denial certainly didn’t hurt. For those of you reading this blog for the first time, here’s a little history.
I’ve had scleroderma and sarcoidosis for 26 years. I could write encyclopedic volumes about my medical experiences, but that is not my story. I’m still here because I learned to laugh at what scares me. Like many patients, I found the strength and the courage to advocate for myself.
I was inspired to talk about my experience in 2001 after a 3-year-old in a shopping cart asked, “Mommy, what happened to that lady’s hands?”
The embarrassed mother apologized and silenced her curious child, but after months of hiding my hands, I replied, “Thank you for asking. I have scleroderma.”
A short conversation continued and the little boy simply wanted to know why my hands looked different than his.
Something clicked and I found my voice. Scleroderma is no joke. It’s a progressive degenerative disease, but humor helped me explain crazy symptoms to doctors, nurses, family, friends, and total strangers.
It’s not my job to make people feel at ease about my disabilities, but when I want people to learn, humor puts students at ease and that makes things easy to remember.
Eventually, physicians asked me to do grand rounds. At the end of each round, my exam room was standing room only with medical students that had to be forced out by attending physicians.
My casual manner with doctors also helped save my life after a symptom was ignored by radiologists and physicians, which led to an additional diagnosis of sarcoidosis.
I have lived through the worst of scleroderma and sarcoidosis. Now, I am able to do what I wished I could do in my 20s, realize my potential.
Armed with a stable diagnosis, I started a blog, worked with some non-profit organizations, branched out into stand-up comedy, and now I’m in graduate school. My thesis is going to be a stand-up comedy special/documentary.
For years, women with illnesses like scleroderma, lupus, and fibromyalgia were told their symptoms were all in their heads. The biggest factors of course are the standard patient model is a white male and American culture has us conditioned to cowboy-up, rub some dirt on it and walk it off.
Since I began recording podcasts, I have found my guests eager to learn more about rare illnesses, and the crazy things patients face just to get effective treatment.
I have been in VA Healthcare and have had primo private health insurance, Look, medical insurance companies and the VA are a lot alike, but medical insurance companies have better PR departments.
Scleroderma in 60 Seconds is designed to reach people who do not deal with scleroderma or chronic illnesses every day. I believe this has the potential to inform voters, educate those who support caregivers in their family, strengthen patient advocates, and create allies outside the chronic illness community.
I hope that you will find it entertaining as well as helpful. Thank you for reading!