Meet Stacie Bishop
Name: Stacie Bishop
Skin Condition: Scleroderma
I feel like people with skin conditions often have a one-line explanation that they use to explain their skin condition to others. Tell us yours.
Translated literally, scleroderma means "hardening of the skin." So for those who speak Latin, it's pretty self explanatory. Scleroderma patients make too much collagen, which becomes scar tissue. I have localized scleroderma, which means this collagen is mostly stored in my skin. For me, it is only on my right side. For patients with systemic scleroderma, it can be stored in internal organs. But no matter where it goes, it causes damage.
What are you up to in life right now?
Trying to find a balance, while figuring what I want to do and how can I make it happen. I do have some physical limitations and while I've accepted that I'm still trying to find out where my comfort zone is.
Health wise, a lot of physical and occupational therapy. It's not unusual for scleroderma patients to lose mobility in their joints so I'm trying to be proactive to avoid that happening.
You just rallied your friends and family to do a scleroderma awareness raising walk—for the 9th year in a row. What's the benefit of these events? Why do you keep doing it?
It was actually one of my sisters who heard about it on the radio originally. Being a part of a gigantic family has its advantages. All the donations go to the Scleroderma Foundation.
I feel like it also serves as a reminder to those that know me that Scleroderma isn't just some quirk or a birthmark I have, it's something that impacts me every day. Because my skin symptoms aren't always immediately noticeable, I often feel like I'm caught in between the categories of "invisible illness" and "skin condition."
My friends and family do it to support me, but I've always felt very fortunate for a sclero patient. I'm able to walk a 5k after all, something that healthier people than me can sometimes struggle with.
Tell me more about your job in healthcare. Does having a chronic illness affect your work? Tell us know. Are there accommodations that make your life easier?
I only work part time, because how I feel can vary day to day. Working at a desk which does make it easier, though sometimes working at a computer for hours can bother my sclero-affected wrist so I frequently wear a wrist brace. My boss is thankfully very understanding, she's never had an issue with me switching my hours all around or needing a day off to see my specialist. Because Scleroderma is an autoimmune disease, I catch every cold that goes around. I frequently call myself a petri dish.
You wrote a piece in The Mighty about the phrase 'thick-skinned'—how, as a person with literally thick skin, the phrase is darkly comic to you. I'd love to hear your thoughts on the way we use skin-related language (e.g., thick-skinned, gets under my skin, etc) in everyday life. Is is limiting or unfair? Are there better turns of phrase? What about how we talk about skin disease? Is there a way we could talk about scleroderma that would be empowering?
"Thick skinned" or "thin skinned" are the only phrases that truly bother me, because they're often used to insult people who are considered too sensitive. I don't see sensitivity as a bad thing so I don't appreciate my symptoms being used to discourage it.
I often joke about sclero but I've had it nearly my entire life, I've found that patients diagnosed much later in life feel differently. But it's the only life I've ever known, so I might as well have some fun with it. More than once I've joked about how my excess of collagen may mean that I might never get wrinkles, so I must be immortal.
Where can we keep up with you?
I don't really have any sort of online presence unless you happen to spot me in scleroderma groups on Facebook, but anyone would be welcome to email me at StacieMargaretBishop@gmail.com