INDEX — family life and impaired relationships

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.

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:

How has PRP affected your family life and relationships?

INDEX — family life and impaired relationships

One Reply to “INDEX — family life and impaired relationships”

  1. One of the best posts EVER on PRP and relationships. Members of the PRP Facebook Support Group can read the original post at
    https://www.facebook.com/groups/15865278115/permalink/10154433907643116/?match=Y3VkZGxlcyxjdWRkbGU%3D

    Tania T (Harz, Germany) started a discussion with fellow members of the PRP Facebook Support Group on the subject of PRP and relationships. She wrote: “We talk about the symptoms, the drugs, the doctors and the frustration……but what about relationships?

    SOME OF THE FEEDBACK

    … mine has suffered, dont get me wrong I still love my prp partner just as much, but a lot of the closeness has gone……i mean the cuddles, the holding hands, the quick peck on the lips…

    … For me, it took about 3 years from initial diagnosis to feel like I had my husband “back” and another year or two for PRP to not be a dominating factor. A long haul but worth it! I found a therapist who helped me understand chronic pain and that was really helpful. I hope this helps you. Best of luck!

    … I have had PRP my whole life, and while I accept myself and all that stuff, a flare up always leaves me feeling self conscious. It’s not attractive, being red and flaking. And when your skin hurts being touched isn’t always pleasurable. I like to think it forces me to focus on deeper connection (because there’s no other choice!)

    … Men don’t like to talk about this at all.

    … we had a very healthy sex life, although he has stopped flaking, he is always very tired and definitely lost a lot of his confidence. Once he was very independent, Now through this illness and other illness’s he depends on me more and more….therefore he is no longer the dominant person in the relationship. I have taken the role of “the man in the house” and the wife! I blame this on his lack of interest!

    … When you dislike how you look, and how you fee, it is easy to withdraw. Hugs and kisses don’t feel the same. Intimacy is uncomfortable. The relationship becomes strained, and yes, the patient becomes very self oriented. Then fairly soon, what was not acceptable behavior, suddenly is. Some one starts feeling left out, feeling like a lot is being asked of them. We didn’t expect this to last so long, and be so much work. Talking things over seem to become useless. I guess now is the time to seek professional help

    … The distance starts, it’s unspoken at first, then habit, then resentment, etc etc. This disease could have easily broken my relationship but I was lucky. We had a period of probably two years with next to no physical contact while I healed until my husband finally reached his limit. But he had been afraid to bring it up because he thought he would sound like an ass even though he was very supportive along the way. Years later we are still affected by that distance but we just try to consciously work on our relationship all the time. Nothing about this disease is easy!

    … As a man, I don’t feel like a man anymore. I have had to give up work, I can’t to do the man of the house duties, we have slept in separate beds for the last 10 months, haven’t been at all interested in being intimate in that time. All this makes me feel useless. My partner is wonderful in the fact that she cares. Although she might not know how I feel. (only other prp ers can really know how I feel) she is an extremely caring person, and I am so grateful for that.

    … As the carer, i have not actually said to my partner i miss the intimacy as i dont want him to feel bad, i have mentioned several times how much i still fancy the pants off him lol what a terrible disease this is……blah!! X

    … Intimacy is hard when your skin is malfunctioning. I feel disgusted with my body 99% of the time. The only thing that feels good (and hurts at the same time) is a really good scratch or lying in the tub until the water turns to paste. I am tired a lot, mentally exhausted and just plain frustrated or disgusted with this disease all the time. I am lucky to have a supportive and understanding spouse, but I do worry.

    … I’ve barely let my husband see my skin for fear of tainting his image of me. My daughter does my back. Now that I’m improving so much, I’m still hesitant.

    … I felt i had lost the closeness we had pre prp, i didnt want to be shut out! I wanted those hugs and cuddles as we watched tv even if it meant flaky skin on me. It wasnt until i made him realise that he was letting PRP beat me down too, losing the closeness meant losing him to the disease. So we made the creaming…oiling…after a shower part of our efforts to regain the closeness and his confidence to let me back in.

    … After my diagnosis of PRP my partner of more than 10 years could not handle it… So we broke up due to cheating and lies …

    … This disease realy takes it out on us it takes over our lifes and leaves us feeling rubbish tired itching but each day i do believe things will get better soon and please god i do hope so i can get my life back on track xxx

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