“You poor thing!” If only I had a dollar for every time I’ve been called a “poor thing” in the last 35+ years since I developed Psoriatic disease… I don’t think people mean to hurt my feelings by mentioning my disability, but I am constantly reminded that I look “different”.
What people see when they look at me is a woman with a stiff spine, who can’t move her head and wears a brace on her wrist because the joint is destroyed. Actually, that’s not as bad as it was in the past because, in addition damage from Psoriatic Arthritis, Psoriasis used to cover my body over 90%. Now, thanks to a biologic treatment, it’s only on my scalp, torso and some spots on my legs.
When I explain to people that I have Psoriatic disease, that’s when they say ‘You poor thing”. I kind of laugh to myself because if they only knew what was going on on the inside… constant pain, irritable bowel, digestive problems, anxiety, depression, chronic fatigue, brain fog, discomfort of fibromyalgia … Every day is a challenge. I have a window of about 5 hours a day when I can be active and clear-headed. Every activity must be planned, with a lot of rest periods.
Like so many, I’ve tried many, many treatments and I can’t help but be depressed as my health gets worse and I become even more disabled as I get older.
But here is my secret: I have found that helping and supporting others who suffer with psoriatic disease makes me happy and gives me energy. In fact, it makes me so happy that my pain disappears at the time and I forget I am disabled. I don’t know the science behind how this works, but it works for me.
I discovered this when in 2003 I contacted the National Psoriasis Foundation/U.S., which changed my life. I connected with dozens of people like me that needed support and I wanted to help. I was filled with a sense of purpose and extreme happiness that this was something I could do!
I became an advocate and later serviced on the Board of the NPF, and the more I volunteered and gave of myself, the happier I became and wanted to do more and more. This led to my involvement with IFPA, where I could be an international advocate and use my time to help people impacted by psoriatic disease and other chronic noncommunicable diseases (NCDs) on a global scale.
Psoriatic Disease, inside and out, has disabled and reduced my life in many ways; however, I am not a “poor thing.” I’ve chosen be an advocate to try and make a positive impact, which makes me happy beyond measure.
Board Member of the International Federation of Psoriasis Associations (IFPA)
Ex-Officio, National Psoriasis Foundation/USA