PRP Survival Guide

Coping Strategies signage

Issues and strategies a related to coping

The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.

Share what you have learned about coping with the ravages of PRP. What worked. Share articles you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the end of this webpage to share.

Bill M (Plano, TX)

There finally came a day when I was able to drive myself to Walmart for basic grocery shopping. It was a bona fide Healing Milestone. While I took advantage of handicapped parking, I triumphantly walked past the electric scooters with their front-mounted baskets.

What I didn’t expect was the reaction of passersby as I navigated up and down the aisles. I had to figure out how to react to the reactions of others who were confronted by a 6 foot, 3-inch, 250-pound strawberry. I glowed! 

Passersby NEVER said anything remotely rude. That might have been my “Intimidator”, a U.S. Marine Corps sweat shirt.

But they would stare. Oh, how they would stare.

The difference between a glance and a stare is a measurement of time. The glance is swift and fleeting. The stare, however, is measured in seconds … one thousand and one … one thousand and two … one thousand and and three. Even a subtle stare feels like a paper cut.

Fortunately, I’m outgoing but nature, so coping with the stares of strangers became a challenge that quickly evolved into a knee-jerk response.

Make eye contact  Once I see that their eyes are locked on my eyes, I blurt out: “I have a rare skin disease that’s not contagious.”

Stay engaged It is a split second decision — my decision. If they break eye contact, I disengage and let them off the hook. They know they got caught. I conclude that their stare was just idle curiosity. No malice intended. 

However, if the stare continues I shorten the distance between us and say: “It’s a very rare disease called pityriasis rubra pilaris. One in 400,000. Only 800 in America, 60 in Texas and 15 here in the Metroplex.” Everyone at that Walmart knows that Metroplex is Dallas to Fort Worth.

Get a Reaction Most will say something like “WOW” and ask a question or two. If not, I add something like “It’s like a bad sunburn. The cause in unknown and there is no cure. And it can last three to five years.”

Disengage My parting comment: “I love being able to shop again. Have a great day,”

Nod and Smile Later, while walking down the cereal aisle in search of Honey Nut Cheerios, I would often see the person with whom I had engaged, ever so briefly. When we make eye contact again, there is a smile rather than a stare. Sometimes they actually ask a follow-up question.

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