INDEX — coping strategies

From the Editor
The PRP Survival Guide is 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. We need to harvest that knowledge for those in need of enlightenment.

 Don’t suffer alone. Reach out.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the bottom of this webpage to answer the following question:

What coping strategies have you developed to deal with the challenges of body, mind and spirit?

INDEX — coping strategies

One Reply to “INDEX — coping strategies”

  1. When I finally was able to go to Walmart for basic grocery shopping — a bona fide Healing Milestone — I had to figure out how to react to the reactions of others. At 6’3″ and 250 pounds, passersby NEVER said anything remotely rude. But they would stare.

    The difference between a glance and a stare is measured in seconds. It is subtle, but feels like a paper cut.

    I’m outgoing but nature, so coping with the stares of strangers became a knee-jerk response.

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

    2. Stay engaged. It is a split second decision — my decision. If they break eye contact, I disengage. Their stare was just curiosity. However, if the stare continues I move towards them and say: “It’s a very rare disease called pityriasis rubra pilaris. One in 400,000. Only 800 in America and 60 in Texas.

    Most will say something like “WOW” and wander off. Others will ask a question or two, then wander off.

    Later, while walking down the cereal aisle in search of Honey Nut Cheerios, I would see the person who had stared earlier. We would make eye contact again and smile.

    IMHO — Coping strategies are ways to deal with “things that hurt” we can have a positive impact. People who stare. People who make rude comments.

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