Building a Psoriasis Community: Pso Family
Last updated: December 2022
When I found out I had psoriasis and psoriatic arthritis I felt like the world had crashed in on me. First off I had not ever heard of psoriasis. Secondly, how could I have arthritis at 22 years old? Thirdly, I wondered if I was the only one who had it.
My journey started alone but ended with my psoriasis family, or as I call them, my Pso Family.
An uphill battle in solitude
Learning more about psoriasis and psoriatic arthritis on my own was scary. It didn't take long before my thoughts turned lonely. I was grieving and coping with how I was going to live with this lifelong disease.
Finding out that there is "no cure" for either and only remissions, I felt like I was given a death sentence. Like a death sentence - it felt very much like an uphill battle in solitude.
I began to accept this lifelong journey and search for others. There had to be other people out there dealing with this on their own and I was determined to find them. I found the National Psoriasis Foundation and my life began to change.
Comfort in community
I found myself in a support group - a room full of people just like me. We had joined this group to discuss medically, mentally, and physically our new normal of managing life with psoriasis. My mind was so anxious. I was surprised at how comfortable I was in their presence.
I was amazed by these fellow psoriatics. They were looking for others too. We formed connections and friendships over common symptoms, feelings, and volunteer work.
I got more involved, by attending conferences with forums, speakers, and volunteers. It became a highlight in my life. I was met with support outside of my physical family. People I now call my Pso Psisters and Pso Brothers. Walking, talking, and not worrying about how I look with these people continues to give me significant peace of mind.
A meeting of the minds
At a conference in San Francisco, California, I woke up on a semi-gray day and walked to get breakfast. There were lots of people and I couldn't find a table that didn't have others sitting at it. I decided to ask a stranger if I could sit with her. She agreed.
She was at the conference too and we chatted about the weather. We got up and started out for the day's events and kept finding we were going to the same things. We started talking about how we related to the contents of the events. Pretty soon we started laughing and enjoying each other's company.
That was the start of the beginning of a friendship that will last the test of time. We have spent time texting, talking by phone, video chatting, and seeing one another in person. We laugh, we cry, but most of all no matter what we understand what we are going through.
Thankful for my chosen family
My PsoFamily, the Pso Brothers, and Pso Sisters have continuously been there for me with a helping hand. Knowing that someone is there on this seemingly endless journey gives me hope.
My Pso Brothers have given me such wonderful memories, great advice, and most of all unconditional love! My Pso Sisters have helped me overcome being shy. I have been protected, encouraged, and made to feel like a regular person. We wipe tears when we need to and love with our whole hearts.
I will forever hold my Pso Family close to my heart. For all of you who have been and for all who are not yet friends, thank you.
Are you interested in talking about sex and intimacy with psoriasis?