Psoriasis can make us feel like pariah’s, like no one understands what it’s like to be us. Having a support system to fall back on can be a lifeline in a lot of ways. In March of 2016, I read an email invitation from the National Psoriasis Foundation (NPF) that turned out to be a life-changing decision-to attend Psoriasis Day at the FDA. Until that time, I had not really known anyone personally (or so I thought) who had Psoriasis. Attending the meet and greet the night before the FDA event, and then the event itself, being in a room full of people who were “like me,” who have looked like me, suffered like me, been LOOKED AT like me, it was an incredibly empowering experience. I made life long friends over that day and a half, and also began volunteering and mentoring, which is so fulfilling.
My family is amazingly supportive, and I would never trade them for anything. They are my rocks. They support me and stand up for me, and let me cry on their shoulders when someone hurts my feelings. They hurt for me. What they can’t feel is the incredible itching, the burning, the overwhelming fatigue that comes with the territory. The frustration of treatments that don’t work, flakey scalps, cleaning up the flakes we leave behind…I could go on and on. This is where shared experience comes in.
My mentee’s thank me for giving them time, talking to them and listening to them. They are all so surprised when I tell them that they help me as much as I am helping them. We all need someone to talk to, someone who’s not afraid to hug us or hold our hand, who has actually shared the same experiences we have.
There is an immediate bond when fellow Psoriatic’s meet. We start sharing our stories, and the next thing you know, we have exchanged phone numbers, emails, Facebook and Twitter handles along with breakfast and lunch. It is a truly amazing experience. And you can never have too many friends who are willing to brush your flakes off the table!!!