Even though my grandma had psoriasis, I grew up with a very limited understanding of what it actually was. I can’t recall her having a flare when I was a child. In fact, she once said that after a trip to Alaska in her 50s, her psoriasis never flared again.
Knowing what I now know about psoriasis, it’s an incredible mystery. And one day I hope to visit Alaska to uncover it for myself!
My own diagnosis came in the spring of 1998 when I was just fifteen years old. Back then, the internet meant dialing up to AOL and instant messaging with my friends as “JBuBBLeS13.” It wasn’t a place yet to meet other people who live with psoriasis. And I definitely wasn’t allowed to meet strangers on the internet.
I also wasn’t using the internet to do independent research and learn about my condition. My information on psoriasis was limited to short doctor’s visits and pamphlets in the waiting rooms. My lack of knowledge left me with some interesting ideas about psoriasis and “how it worked.”
I thought it was just a skin thing
At first, I didn’t think of psoriasis as anything more than red, itchy skin that gave me spots all over my body. The medication options I was offered only treated the outward appearance, so it was a few years before I even heard the term “autoimmune disease” in relation to psoriasis.
Understanding that psoriasis started from within changed how I approached my treatment and thought about the disease.
Now I’m passionate about treating psoriasis through a holistic approach that attacks the condition from all angles: from the inside and outside, and with the added benefit of emotional support. It’s not just a cosmetic thing. There’s something happening inside your body and the red patches are just one of the symptoms of psoriasis.
I thought it would go away
Probably because of its appearance, I thought psoriasis was like chicken pox. I’d be uncomfortable for a few weeks, wear pants and long sleeves, and then the medication would kick in and I’d be done. Forever.
The term flare didn’t mean anything yet, so it took a while to accept that a psoriasis outbreak could stick around for an extended period of time and that it would continue to happen for years.
Even though I keep track of my flare triggers and aim to steer clear of them, and I also do my best to avoid stress, sometimes flares still happen. A flare can be triggered by things out of my control, like my hormones changing after the birth of my daughters. I may also get a flare if I get sick with the flu.
I thought there was only one kind of psoriasis
It was quite a few years before I learned that there was more than one type of psoriasis.
I found out when I attended a National Psoriasis Foundation event and someone asked me what type I had. At first, I was weirded out that a stranger was asking for my blood type. My initial reaction must have shown on my face because she very sweetly explained that there are five different types of psoriasis and that it’s not the same for everyone. It turns out, I have plaque and guttate.
I thought there was one prescription for all
Before my diagnosis, I was used to pretty basic options for medication — usually found in a liquid or pill form. It might seem naive, but I had been pretty healthy up until that point. Back then, my typical trips to the doctor had been limited to yearly check-ups and everyday childhood ailments. Getting shots was reserved for immunizations.
Since my diagnosis, I’ve treated my psoriasis with creams, gels, foams, lotions, sprays, UV light, and biologic shots. Those are just the kinds, but I’ve also tried multiple brands within each kind. I’ve learned that not everything works for everyone and this disease is different for each of us. It can take months and even years to find a treatment plan that works for you. Even if it works for you, it may only work for a period of time and then you will need to find an alternative treatment.
The takeaway
Taking the time to research the condition and get the facts about psoriasis has made a big difference to me. It’s cleared up my early assumptions and helped me to understand what’s happening in my body. Even though I’ve been living with psoriasis for over 20 years, it’s incredible how much I’ve learned and I’m still learning about this disease.
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.