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. Whenever you have information to share, please send your “sharings” via email to editor@prpSurvivalGuide.org.
In the Workplace
An informative article about psoriasis in the workplace has been posted on the National Psoriasis Foundation’s website. We just change the word “psoriasis” to “pityriasis rubra pilaris” or “PRP. 1. Communication is key: whether it is letting co-workers and managers know about pityriasis rubra pilaris, or preparing the work environment to ease a person’s disability. 2. Like friend and family relationships, work relationships require a certain amount of communication and honesty. 3. Co-workers may be curious about and employers may wonder how the skin disorder might affect a person’s work. 4. It is important for people with PRP to understand their disease, their employment rights and their resources in the workplace. If you are experiencing discrimination in the workplace, seek help.
Tips for workplace communication
Plan ahead
Plan carefully how and when to discuss your PRP with co-workers or supervisors. Education about PRP and its symptoms can help change their perceptions and expectations of people with PRP.
Meet with your manager
Schedule a meeting with your supervisor at a time when neither of you is under pressure. Describe simply and plainly the ways your PRP may affect your work. The goal is not to generate sympathy, but to find ways to resolve the problem that will benefit the company, your co-workers and you.
Offer alternatives
Be prepared to offer suggestions for possible changes, such as using assistive devices. Assistive devices are items you may need to help you do your job more easily. Chances are any changes you may need will not cost much. Tax deductions and/or tax credits may be available to certain employers who provide accommodations and/or jobs for people with disabilities.
Communicate with your co-workers
Understand that co-workers can become resentful if they feel you are not doing your share of the work. Explain to them how the PRP affects your ability to work, but that you are making reasonable accommodations.
Listen to your body
You may be tempted to “work through the pain” of PRP, but overdoing it can trigger exhaustion, and potentially worsen your condition. Instead, set priorities and pace yourself. List your tasks in order of importance, and do the most important ones while you feel strongest and most energetic.
Create a healthy work environment
Arrange your area to limit the amount of lifting, reaching, carrying, holding or walking. Vary activities to avoid sitting in one position or repeating one action for too long. Go to bed at a regular time and get enough rest to carry you through the next day.
Develop a support network
Other people in the workplace may have physical disabilities and can offer support and understanding.
Maintain a positive attitude
Remember that you’re allowed to have low-energy days, but that you’re in control of how you relate to the disease. Share your thoughts with other people with PRP who belong to the PRP Facebook Support Group.
ORIGINAL ARTICLE: https://www.psoriasis.org/about-psoriasis/living-well/in-the-workplace.
Jan T – Ringwood, New Jersey
Re: Article from the National Psoriasis Foundation. I did not have to deal with those workplace issues, luckily, but I know many others have. (I’m not discussing energy levels and effects of the illness on the ability to do work, which are a separate matter): Primarily–the article is based on psoriasis, in which the main *interpersonal* issue is the appearance of the skin, which we *do* have. But I think the main problem with PRP that psoriasis does *not* share is the mess of shedding skin all over. I know some people have had to wear dark clothes to work regardless of the flakes. I know that some people who have had to work in close proximity with others or with the public may have had a hard time with other people’s reactions to the flaking and fears about hygiene. How is that dealt with? Does the workplace issues article need more on the difficulties of shedding? (April 15, 2019)
Traci W – Seymour, Indiana
I found that with my acute phase of PRP, my coworkers did not understand the physical changes I went through. I worked in a hospital Pain Center. I along with a few others was concerned with the over abundance of shedding skin, my cracks on my hands (risk of infection or disease from others) and my feet and legs swollen to three times my normal size, not to mention the inability to walk or stand for very long. My HR department, manager and director accommodated my needs for awhile, but then I was forced to take leave (and lose 20 years of seniority, my job, my insurance) or lose my job (fired). Education is a huge key for employers and coworkers ( not contagious, etc) to understand the needs of this illness.
Wayne M – Sydney, New South Wales, Australia
I was an outdoor worker when I got PRP. My dermatologist said I couldn’t work outside for 18 months. My employer found me a position indoors. I’m on methotrexate at the moment still shedding. I need to go to the bathroom and lather up 3 to 4 times a day at work but still leave skin everywhere. Before PRP I was working 9 days on, 5 days off. Now i work 4 days a week.
Karen A – Sarasota, Florida
In reply to Wayne M: If it were not for this support group to educate myself on this diagnosis I believe that I wouldn’t have been able to address this when I needed to do so.
I was fortunate to not have this spread onto my face so I wore slacks and long sleeves. Hid the severity of this quite well. But communication was important so I told my Broker/manager what I had and my coworkers prp but to not get over their heads too much that it was like psorasis. They understood that.
Took all my lotions and potions with me and off I went to do my job. Because of the severity of my hands and feet I struggled with the most simplistic of things. Opening toner boxes stacking paper reams Kerig boxes for
The kitchen etc. wore my gloves for files. I’m fortunate that my coworkers have been so supportive and encouraging. That’s the key to still be persevering and working otherwise I believe that I would be so depressed and not focused on the positive things.
Always keep moving forward!