I've had psoriasis since I was 13, so at this point I've had it for more than half of my life. Mine started on my scalp. I started going to the doctor and she thought it was dermatitis, just a dry scalp. She gave me ointments, and it just wasn't going away. After another two years, I started getting spots all over my body -- but little ones, because I have guttate rather than plaque, so it looks kind of like a tiny rash. When that happened, we were visiting family in Argentina. My mom's really good friend works at a big hospital there and she made her take me to the dermatologist. He took one look at me and said, "You have psoriasis."
Of course, I was just like, No, no, no. I don't know what that is, and for two years someone's been telling me that I have dry scalp. But he said "No. I'm going to run some tests to see if it's a fungus or if it's any other kind of infection, but ...." And of course he was right. I was amazed. He had one look at me, at my scalp, my spots, and he was certain.
I had no idea what psoriasis was -- I just knew it was bad. I just remember that the doctor gave me some things to pick up at the pharmacy, and I was thinking, "What is going on here?" Even now, I don't know anybody in my family, on either side, who has psoriasis. I have family in Spain, and they've told us, "Yeah, we don't know anybody here, either."
You know, I honestly don't remember if anyone really explained the condition to me. But thinking back now, and knowing that I went to the doctor for so many years and I never, ever even heard that word. It's kind of unbelievable to me now.
When I came back to the States from Argentina, my scalp was getting worse. I finally, finally started seeing a dermatologist when I was around 16, and started getting a handle on treatment for it then. But I don't think I was aware of what psoriasis really is until I was older. At that point, when I was teenager, I was definitely angry, because for a couple of years I'd had different people telling me different things, and I didn't know who to trust. And what really gets me upset is that all these years later, my mom still feels guilty -- like there was something else or something more she could have done. But I tell her, "Mom, you go to the doctor and they tell you something, you're going to take their word for it, right?" The fact is, especially because I was young, I didn't know how to advocate for myself.
I was diagnosed with psoriatic arthritis 10 years later, when I was 25, and in a weird way it's kind of funny, because my experience with that diagnosis was sort of the opposite of when I was a teenager. When I got diagnosed with psoriatic arthritis, I was one-hundred percent relieved, because by that point I knew about the National Psoriasis Foundation, and I knew that this was possibly what I had. The diagnosis kind of validated my feelings, because I was really tired, my joints hurt, I was in pain -- all the usual symptoms. When you're in your early 20s, or even now, in my 30s, a lot of people just don't believe it when you tell them that you have a form of arthritis. I got really lucky, with a really good rheumatologist -- with psoriatic arthritis, it's really hard to diagnose and pinpoint, so unless you have a rheumatologist that's been around the block for a while, they kind of don't want to diagnose it -- and when he told me that I had it, I was like, "Okay. I've been waiting for it."
One piece of advice I have for people with psoriasis and psoriatic arthritis -- besides learning to advocate for yourself, which is absolutely crucial -- is that that you should invest if you possibly can in really good bedding. If you have blankets and sheets that are nice and soft, you won't irritate your skin and you'll be able to sleep better, and sleep is so important for everyone, not just those of us with chronic illness.
And definitely look into hypoallergenic soap. I learned that the hard way. I spent a lot of the time scratching myself, couldn't figure out what it was, and finally realized that the soaps I was using, including laundry detergent, were irritating my skin even more. So those two practical steps -- which might seem small -- could definitely help. Nice bedding and hypoallergenic soap. Money well spent.