Growing up, I never knew anyone else who had psoriasis. Even when I would see someone with psoriasis out in public, I never said a word, because I would remember the feeling of embarrassment whenever I was asked about my own psoriasis. I felt as though the ideal situation was when no one would notice or ask me about my own disease. The key word there is “felt” not “feel,” because things have changed.
Having lived with psoriasis for 31 years and psoriatic arthritis for seven, I have a lot of life experience that I can use to help someone else going through what I have gone through. Living with a chronic illness is undeniably difficult. Being diagnosed at a young age makes the illness feel unfair and like a life sentence.
I know how lonely, isolating and scary psoriatic disease can be. I know the feeling of fear that any day a flare up could occur and spiral out of control. I know the fear that nothing will help the physical and emotional pain, and I know how it feels to think of being stuck in this endless cycle for the rest of my life.
These are just a few of the reasons why I decided to become a mentor in the National Psoriasis Foundation One to One program.
The Reward for Mentoring
I started as a mentor in Aug. 2020. I did not expect it to be as rewarding as it has been. When I help a mentee with my experiences, suggestions or simply as a listener, I feel a sense of accomplishment. If I can help one person, even for one day, feel more hopeful and in control of their disease, I feel like I have succeeded.
Taking it one day at a time is paramount when dealing with psoriatic disease, because there is no telling what condition – good or bad – could arise tomorrow.
Being a mentor has also helped me be more present in my body to manage my own skin and joint health. For instance, I am more conscious of how necessary self-care is to reduce stress and symptoms. When I find myself telling a mentee to eliminate, reduce or manage symptoms through rest, good nutrition and gentle exercise, it helps me remember to apply those same standards to my body. You might call it a “practice what you preach” mentality.
I empathize with the sentiments of hopelessness, fear and depression but want to make my mentees aware that although it seems like it will be that way forever, it does not have to be. We all need peer support, and that’s what the One to One program provides.