Finding Friends & Support Within The Psoriatic Disease Journey
Since the age of 5, finding and keeping friends has always been a unique challenge for me. You see, I was diagnosed with psoriasis at that same age. My severe visible skin symptoms always seemed to be a deterrent for making new friends.
Throughout the years, I was so lonely. I suffered from depression and hopelessness. Will I ever have trusting and fruitful friends? Who knew?
Kids can be cruel...
Throughout my school years, most peers didn't want me as a friend because of my "rash". My psoriasis was very flaky and it was apparent that parents didn’t want their children around me. They feared I was contagious. They didn't their child around the kid with the bad skin.
Entering my pre-teen years - things went from bad to worst. Kids were mean. They never gave a thought to what they said or considered my feelings. I was lucky to find a couple of friends, but no one to hang out with and tell my deepest secrets.
I had friends for years that didn’t know my whole body was covered in plaques and pain. I kept this nightmare to myself. It was easier for me to be a friend to other people. I learned to be a good listener and give good advice.
There were days I would daydream about having lots of friends. I just wanted to escape this life of having this incurable disease and stop letting my skin speak for me. Of course, this never happened.
An unexpected friendship
As a teenager, I found myself sad and alone in the mall. I was not only a physical wreck, but an emotional wreck too. I cried every day.
This nice lady started talking to me. She called me unique and told me I was special. We struck up a friendship, and I began to tell her stories about my life and having psoriasis. I had never talked about my disease to anyone.
She was in awe of my story, and we became life-long friends. She didn’t have psoriasis, but she shared with me that she had stage 2 cancer. I remember her telling me how glad she was to have met me at the mall on that day. She told me she had wanted to die, but saw me and I looked like I needed a friend more.
She said her fear of having cancer diminished when she heard my story about having psoriasis and being all alone in this world.
Becoming an advocate
This special exchange shaped me. From that moment, I realized that sharing my story was something I could consider an obligation instead of something to be ashamed of. That keeping my story and experience to myself was only hurting me - and limiting my opportunity to help others.
I didn’t know how I would do this but I knew I needed to do something. I didn’t want anyone to have to go through their own journeys alone - just like I have.
Since this moment and my commitment to advocacy, I have been referred to as a friend many many times. Why? Because on this journey of being a patient with psoriasis and psoriatic arthritis, I know what it’s like to be alone. I know what it’s like to cry in pain. I know what it’s like to be pointed at, talked about, and feel the world has forgotten you.
If you feel alone, join a support group and stay connected to the psoriasis community. It will help to talk to people who share the same journey. Over the years I have met numerous people with psoriasis and psoriatic arthritis who are alone. You never know who you can help.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?