Aimee’s first psoriasis breakout occurred when she was just 12 years old. She was at a sleepaway camp, where something about the change in environment triggered an outbreak of plaques and scales all across her scalp. Her symptoms would come and go for the next several years but remained manageable, until she was hit with a massive flare at 21 after a traumatic event. This seemed to open the floodgates for her psoriasis, causing an outbreak that covered most of her body. At first Aimee would rely on unhealthy coping mechanisms while trying to hide her psoriasis, but at 26 realized this was unsustainable. She started posting psoriasis selfies online and making shirts stating that psoriasis isn’t contagious, finding the courage to conquer insecurity through budding advocacy. Now 34 years old, Aimee has made great strides in finding healthy and positive ways to live with her disease while becoming a psoriasis educator and advocate.
In this episode of the Major Pain podcast, Aimee discusses her complex relationship to psoriatic disease. She not only has psoriasis, but also psoriatic arthritis (PSA) which causes joint pain, stiffness and swelling. With a visible skin condition, she feels that every social interaction carries the risk of emotional setbacks, particularly with intimate relationships. She has faced horrible judgement and bullying over the years, being told by a former romantic partner that she would be perfect if it weren’t for her disease. Aimee now feels that psoriasis is a “crappy person detector,” helping to weed out people in her life who aren’t worth investing in. Although psoriatic disease is already a challenge, Aimee also lives with mysterious stomach issues and premenstrual dysphoric disorder (PMDD). This causes intense monthly hormonal changes leading to severe depressive episodes. Aimee has learned that acceptance is key to meeting these health challenges. Instead of fighting against them she is learning to work within the parameters her body presents, finding community and support as she spreads her message of acceptance and empathy.
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast