One morning in April 1998, I woke up covered in the signs of my first psoriasis flare. I was only 15 years old and a sophomore in high school. Even though my grandma had psoriasis, the spots appeared so suddenly that I thought it was an allergic reaction.
There was no epic trigger, like a stressful situation, illness, or life-changing event. I just woke up covered in red, scaly spots that completely took over my body, causing me intense discomfort, fear, and pain.
A visit to the dermatologist confirmed a psoriasis diagnosis and started me on a journey of trying new medications and getting to know my disease. It took me a very long time to really understand that this was a disease I would be living with forever. There was no cure — no magic pill or lotion that would make the spots go away.
It took years of trying every topical under the sun. I tried creams, lotions, gels, foams, and shampoos, even wrapping myself in plastic wrap to keep the meds on. Then it was onto light treatment three times a week, and all this before I made it to Driver’s Ed.
When I told my friends at school, they were very supportive of my diagnosis, and asked a lot of questions to help ensure I felt comfortable. For the most part, my classmates were very kind about it. I think the hardest part about it was the reaction from other parents and adults.
I played on the lacrosse team and there were concerns from some of the opposing teams that I was playing with something contagious. My coach took the initiative to talk with the opposing coach about it and it usually settled quickly with a smile. Still, I saw the looks and whispers and wanted to shrink behind my stick.
My skin always felt too small for my body. No matter what I wore, how I was sitting or lying, I didn’t feel right in my own body. Being a teenager is awkward enough without being covered in red spots. I struggled with confidence through high school and into college.
I was pretty good at hiding my spots under clothing and makeup, but I lived on Long Island. Summers were hot and humid and the beach was only a 20-minute drive away.
I can clearly remember a time when I had my first public confrontation with a stranger about my skin. The summer before my junior year of high school, I went with some friends to the beach. I was still dealing with my first ever flare and my skin was pretty red and spotty, but I was looking forward to getting some sun on my spots and catching up with my friends.
Almost as soon as I took off my beach coverup, an incredibly rude women ruined my day by marching up to ask if I had the chicken pox or “something else contagious.”
I froze, and before I could say anything to explain, she continued to provide me with an incredibly loud lecture about how irresponsible I was, and how I was putting everyone around me in danger of catching my disease — especially her young children. I was mortified. Holding back tears, I could barely get any words out besides a faint whisper that “I just have psoriasis.”
I replay that moment sometimes and think about all the things I should have said to her, but I wasn’t as comfortable with my disease then as I am now. I was still just learning how to live with it.
As time passed and life progressed, I learned more about who I was and who I wanted to become. I realized that my psoriasis was a part of who I am and that learning to live with it would give me control.
I‘ve learned to ignore the stares and insensitive comments from strangers, acquaintances, or colleagues. I’ve learned that most people are just uneducated about what psoriasis is and that strangers who make rude comments aren’t worth my time or energy. I learned how to adapt my lifestyle to live with flares and how to dress around it so that I feel confident.
I’ve been lucky that there have been years where I can live with clear skin and I am currently controlling my symptoms with a biologic. Even with clear skin, psoriasis is still on my mind daily because it can change quickly. I’ve learned to appreciate the good days and started a blog to share my experience with other young women learning to live with their own psoriasis diagnosis.
So many of my major life events and accomplishments have been made with psoriasis along for the journey — graduations, proms, building a career, falling in love, getting married, and having two beautiful daughters. It took time to build my confidence with psoriasis, but I grew up with it and believe having that diagnosis in part has made me who I am today.
Joni Kazantzis is the creator and blogger for justagirlwithspots.com, an award-winning psoriasis blog dedicated to creating awareness, educating about the disease, and sharing personal stories of her 19+ year journey with psoriasis. Her mission is to create a sense of community and to share information that can help her readers cope with the day-to-day challenges of living with psoriasis. She believes that with as much information as possible, people with psoriasis can be empowered to live their best life and make the right treatment choices for their life.