Rayanne has never shared her story. The 26-year-old from Brazil feared that it might prevent her from getting a job, or make people doubt her potential. But when Rayanne discovered PsoHappy, she decided to tell her story for the first time and let others know what it’s like to live with psoriatic arthritis and psoriasis.
How I wasn’t diagnosed
Today, I know I have psoriatic arthritis, but it took me 10 years to find a name or meaning for this disease. I was treated like a teenager who just wanted to get attention. When I was 12, I heard the doctors say that I was faking pain; two years later, they warned my mother that I was focused on pain because I wanted to have access to narcotics.
At the age of 16, with the pain getting worse, I even lost my ability to walk – my immune system attacked the bone marrow. The doctors diagnosed an autoimmune disease, but they didn’t know which. With the help of immunobiological remedies, the symptoms passed after three months, and with my mother’s unending support and contagious positivism, I slowly regained the ability to walk. I always tried to lead my life as normally as possible – I finished school, I went to college and, as the years went by, I continued to search for a clearer diagnosis.
Finally, the diagnosis
When I was 22, I had my first skin psoriasis crisis, which covered at least 80% of my body. During this time, I lost about 10 kilos and, as a consequence, some nodules appeared on my neck. Before this scenario, and once I’d had the diagnosis of autoimmune disease, the doctors were almost certain that I had leukemia in an advanced state. I quickly had biopsies performed on my neck and skin, and these confirmed something different: negative for leukemia and positive for psoriasis.
One year after this first crisis, which lasted for at least eight months, I was finally referred to a dermatologist specializing in psoriasis. By analyzing my medical history over the previous 10 years, I was finally diagnosed with psoriatic arthritis, which was manifested since I was 12.
Dealing with the disease
Psoriatic arthritis has brought me a lot of challenges, from daily activities like climbing stairs to the way people around me react to this condition. I was embarrassed when people on the street walked away from me, thinking I had something contagious, or when strangers told me I had mycosis and should get a quick treatment.
The skin patches and pain became part of my routine. One of my coping mechanisms is to always stay positive. I understood that I had to get through this in the best way and try not to let myself down. Being positive is the best way, and depending on the level of positivity, the skin patches could get even better.
The road is still a roller coaster, with a lot of ups and downs, but with the biological therapies I have been using, my skin has been almost clear of psoriasis for at least three years now.
I currently live in Porto, Portugal, but I still stay in contact with my dermatologist back in Brazil. I rely on my dermatologist fully and we use FaceTime to maintain regular appointments.
It was serendipity the way I discovered PsoHappy. While I was taking the survey, I felt for the first time in my life a desire to share my story – all the ups and downs that are part of this journey. Yoga and meditation are part of my day-to-day life, and they help me to deal with this condition during the good and bad moments.
I believe that we need more people to understand this disease – it attacks silently, affects more than the skin and being questioned by strangers does not help at all. It’s just me!
I went against all those who did not believe in me, I counteracted science and even my own mind. I chose to be me, to accept and go hand in hand with something that I do not control but is inside me 24 hours a day, but with a life full of phases and where we can say “We can also get over this”!
I don’t have a body that can withstand many physical pressures, but it has no limits whatsoever for dreams.
PsoHappy explores how psoriasis affects happiness and well-being. Make your voice heard by taking our surveys about different aspects of living with psoriasis