My major trigger occurred in 1999, when I was 15. I already knew what psoriasis was, because my dad has it, too. I remember seeing my first spot. It was on the back of my calf.
Even before seeing a doctor, I kind of already knew I had it. It started popping up other places, and that was pretty much it. At first it wasn't bad at all; it was very light. Then, after a dermatologist gave me an official diagnosis, I was put on steroid topical creams and Ultraviolet B treatments. I would sit in that tar stuff for an hour at home, and my mom would rush me to the dermatologist's office, and then we'd rush home again. I remember we had to drape the car seats with towels so I wouldn't get that cream everywhere!
I stayed on topicals for a number of years. I've never been on a biologic. And my psoriasis, for a while, was clearer. I remember when I got married in 2005, I could wear a halter-top dress for my big wedding, and I had no spots. Fast-forward four years — I went through a divorce, and since around that time, it's been a roller coaster. In fact, I am probably about 80 to 90 percent covered with psoriasis spots at this very moment.
It's not easy, but I think what's getting worse is the psoriatic arthritis, which I was diagnosed with in 2008. Sometimes, when I'm sitting down, it takes me 10 minutes just to stand up straight — or it sure feels like 10 minutes. I'm sitting there saying to myself, "OK, that's like a 90-year-old woman moving out of that chair." But that’s what I’m dealing with.
When I was first diagnosed, I have to admit, I didn't take it seriously. And you have to remember, back then psoriasis was really thought of, by almost anyone who had heard of it, as a skin condition. Period.
I went back to college in 2010, realizing that I wanted to do more with my life, and when the English teacher told us we had to do a research paper and an oral presentation, and we could pick the topic, I picked psoriasis. That's when I first encountered the National Psoriasis Foundation and found all this information and realized, "OK, this is far more than just a skin condition." So even though I now had this knowledge, it was not easy to take, because I was also forced to realize that I was living with a disease that was never going to go away. In fact, it's something that has the potential to devastate my life.
And then, after the oral presentation, I had such great feedback from the class, with people telling me, "Wow, I never knew any of that about psoriasis." I realized that I wanted to get a little more involved in advocacy, and I started attending the walks to cure psoriasis. The more involved I got, the more I felt like my disease wasn't going to define me.
Here's something not many people talk about: As an advocate, you want to try to stay your strongest and show people that it doesn't affect you. But it does. Maybe you'll go out shopping, and you have your arms exposed, and you know people are looking at you. You become self-conscious. You feel judged. And I don't think there will be a time that we won't be judged.
But I'm lucky in so many ways. I have an amazing support system. Besides my dad having psoriasis, my brother also has it. So out of my family of four, that's three of us. So my poor mother has lived with a flake fest for a majority of her life — But she's like a friend when it comes to supporting me. And my brother married an amazing woman who is so supportive and understanding. She has made lotions for us and looked up recipes to make ointments. She's taken that on herself, just to be supportive.
You know, I had a customer at work who had a daughter who has special needs, and she had a big spot across her forehead. I came out and asked, "Does she have psoriasis?" And he was kind of shy about admitting it. But as soon as I showed him my arms, he perked up, like, "Wow, somebody else who understands!" I told him about the National Psoriasis Foundation and the support groups on Facebook. I told him, "Get involved. Find out what other people are doing, and maybe something will help her."
In the end, it's all about sharing knowledge and helping others to realize that they are not alone. Even though the disease can be debilitating at times, and painful, it is not the worst thing that could happen to me. I just try to support myself, and I surround myself with positive people.