Editor’s Note — While I faced the typical and predictable challenges to body, mind and spirit all PRP patients face, there was one major exception: the workplace. I was retired when the “Red Bastard” came knocking on my door in August 2012
Every PRP journey is unique. For many PRP patients the onset of pityriasis rubra pilaris comes when we are employed. The decision to work or not to work is the patient’s choice subject to the realities of the workplace..
Over the past eight years I have heard hundreds of PRP workplace stories. While there are common issues, I would submit that each tale is as unique as each PRP patient’s journey.
The decision to continue working or not is the patient’s choice subject to the realities of the workplace and effects of PRP.
Tales to be Told
On February 14, 2019, Pam A, an optometrist living in Devon, England posted a workplace-related question to the PRP Facebook Support Group. She wanted to know how fellow PRP patients were able to continue working and, if they stopped, what was the reason.
The 69 comments to her post was a reminder that we should gather workplace stories to share with our global community. There are two basic story lines:
❇︎ Patients who no longer have the physical capacity to perform the duties for which they were hired. How did that reality impact the PRP journey?
❇︎ Patients who have decided that they can perform. Individual but must convince a third party.
Respondents to the workplace post are just the tip of an iceberg. While they have been been memorized in the PRP Survival Guide, this should only be the start.
To Work or Not to Work
For some the onset of PRP is so ferocious and relentless that the idea of working is simply not a viable option. Others, for whatever reason, usually financial, make a commitment to stay on the job. The loss of income can be catastrophic. Tell us your workplace story.
❇︎ What were the obstacles?
❇︎ Who were your champions?
❇︎ What resources were helpful?
❇︎ What lessons did you learn?
❇︎ What advice would give?
❇︎ Would you do it again?
PRP patients face a myriad of challenges of body, mind and spirit. Those who are employed at the time of onset may or may not be able to handle the workplace. On February 14, 2019, Pam A (Devon, England), an optometrist asked the following:
Can I ask how long into this journey you have to stop working and the reason why. Is it the treatment or feet or face or tiredness? I am getting through one day at a time reapplying emollients during day. Sleeping tablets help at night. I don’t know if I am going to get worse. Does everyone face the same problem?
Here is a sampling of the response.