PRP Survival Guide

How to deal with rude people

According to Julie Nelligan, PhD, a psychologist and assistant professor at Oregon Health and Science University, it helps to have some quick and simple responses ready.

  • Is it contagious? It’s understandable that others don’t want to catch something, but it still hurts. If your rash was contagious, of course you wouldn’t expose others to it.
  • Our inflamed skin can be alarming to someone who doesn’t know what it is.
  • People are more curious than mean.
  • Take the initiative. Be calm and not defensive.
  • works much better than getting nasty and lashing out, she says.“I find that when I’m calm, they’re calm,” she says.
  • You don’t have to explain the seriousness of PRP to everyone. But if a friend, family member, or colleague asks, you could look at it as an opportunity to spread awareness. 
  • If you do get caught by surprise, and don’t feel like explaining, the best thing to do is buy yourself some space, she says. You can say, “I’d like to tell you more, but now’s not a good time.”
  • If you can’t shake an upsetting remark, reach out and talk to someone,

Based on feedback from the PRP global community, the following coping strategy is an option for PRP patients whether you are dealing with rude and insensitive people, whether they be family, friends, co0workers, teachers, etc. It is also a way to tell your story.


Here are four sentences that you can say with confidence:

  1. SAY: “I have a rare skin disorder that is not contagious.”

    Get the word “rare” up front. Use “disorder” rather than “disease” and confirm that your disorder is “not contagious”. While PRP is not contagious, it is important to include the phrase “not contagious” early in any first-time explanation of why we look the way we look.

  2. SAY: “It’s called pityriasis rubra pilaris, but we call it PRP.” Say “pity-RYE-a sis RUE-bra PIL-a-rus” slowly and you won’t have to say it again.

  3. SAY: “There are only an estimated 832 of us in the United States and less than 74 in Texas.” Obviously you should calculate these numbers for where you live based on a prevalence of one in 400,000. The words “only” and “less than” reinforce the rarity of PRP. While one in 400,000 “sounds rare”, it is a statistic that bounces off the brain of most listeners.
  4. SAY: “PRP impacts my…”

    Here’s where you decide what to share. You can describe what are issues with which you must deal, e.g., impaired mobility, dexterity, hearing, vision, etc.

Other considerations:

  • Make eye contact. Don’t turn away or look down. You may have the opportunity to build awareness of PRP.
  • Smile. Combined with eye contact, the “Door of Enlightenment” may swing wide open.
  • Try not to interpret ignorance for meanness. The best remedy for ignorance is awareness.

Whether a PRP patient, PRP caregiver or the friend of a PRP patient/caregiver, YOU are the source of enlightenment.