From the Editor
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 can harvest that knowledge.
Share what you have learned as a PRP caregiver. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask about PRP and Caregivers.
What have you learned as a PRP caregiver?
Christine G (Zürich, Switzerland)
I am the mother of a child with PRP. One of the most helpful tools as a caregiver was to learn to ASK QUESTIONS.
After the diagnosis I was in a “shock phase”. Asking questions helped me to handle the diagnosis.
Next came the “dealing phase”. That’s when I had to ask a thousand and one questions about how to deal with PRP on my wee daughter’s skin.
Then came the “treatment phase” and I asked questions — and still do. How do I deal with good and bad side effects of the actual treatment?
And then there’s the “living with PRP phase” with more questions about how to deal with daily challenges like swimming lessons, sport lessons at school, school trips, play dates, hobbies, holidays… with PRP.
Because I am the caregiver I don’t know how PRP feels like so I have to ask PRP-savvy Molly, our team of dermatologists, and other PRP patents and their caregivers . I also ask every other person who is around my daughter because they might help me with some new and useful observation about my daughter.
Another helpful tool is OBSERVATION. While observing the skin of my daughter (redness, flacking, itching…) and her eating, drinking and sleeping habits as well as her behaviour (calm, tired, restless, sad, happy…) I am recognizing important changes early enough to be proactive.
And the last-but-not-least a helpful tool is to CARE, SHARE AND LEARN. I use the PRP Community on RareConnect as well as the PRP Facebook Support Group to help me understand and deal with PRP as a caregiver. The shared experiences increase my own PRP savviness as well as my mental health as a caregiver tremendously.
As a caregiver I want to be ready and strong enough the face and deal with my little daughter’s PRP so she can rely on me. I want to be the support she really needs during these rough times on her bumpy PRP ride!
Tania T (Harz, Germany)
From the Editor: The following is an Open Letter (dated June 7, 2017) to the PRP community from Tania T, caregiver for her husband Jules.
To fellow carers and PRP patients —Friends and family often encourage people with illness to stay positive. Is this really helpful?
For people who are medically ill, keeping an optimistic outlook can be tough. Illness is scary and forces them to deal with uncertainty, a lack of control, surrendering to doctors, and the reality that life is finite. All of that is pretty frightening and difficult and not surprising when someone cannot feel positive all of the time when coping with illness.
People who are sick do not need to feel positive all of the time.
It can be trying for people who are ill when friends and family encourage patients to feel happy or optimistic. When a well-intentioned friend says such things as, “Everything happens for a reason,” or “I am sure that you will be stronger from this,” it can (albeit, unintentionally) pressure patients into acting cheery, when they may not feel that way.
People struggling with illness want acknowledgement about how hard their situation is. Those who are ill may not want to dwell on how difficult things are. Yet, when friends and family are overly focused on being positive, it can result in patients feeling pressured to articulate how much they are suffering! Hence the paradox: When the loved ones of people suffering with illness make space for negative emotions, hopeful feelings and better coping often follow.
Being positive all of the time when dealing with illness is unrealistic. In fact, being excessively upbeat is sometimes linked with the denial of illness. Being Pollyannish or in denial can lead to negative psychological and even physical consequences. For example, avoiding the reality of illness can lead to people not taking care of themselves.
Finding a balance between acting falsely buoyant and feelings of despair. Being hopeful is reasonable. Complete disavowal of negative information about illness can be problematic; cautious optimism is often ideal.
People who are ill do best when they focus on what they can control—diet, exercise, and decisions about physicians and treatments. Attitude is important as well. Being positive can be helpful; patients should just make sure there are enough loved ones who can listen when the chips are down. People who are ill need friends and family who can tolerate hearing about all kinds of feelings.
*** I am guilty of many of the things said above….”you will be stronger from this” being one, so after reading the above article I thought I would share.
If you can be naturally positive all the time….brilliant! But if you can’t, it doesnt matter. Share those feelings, it’s why you have them.
Murray R — Surrey, British Columbia, Canada
Canadian Organization for Rare Disorders; Toronto, Ontario, Apr. 3, 2019 – According to survey results released today, two-thirds of Canadians caring for loved ones living with a rare disease feel unsupported by Canada’s healthcare system. The vast majority (87 per cent) have had their family finances negatively impacted as a result of their responsibilities, and three out of four are socially isolated. READ MORE