Sometime in 2005, I started noticing some real issues with my skin. It was mainly on my hands at first, so I assumed I might be allergic to the mouse I was using at work or something. But it kept itching, and it started to get worse, and then it got nasty. I went to a number of dermatologists, and the reaction I usually got was something along the lines of, "Hmmm, well, it looks like you might have eczema. Here's some cream. See you later."
Eventually, I did get a diagnosis of psoriasis, but even then there was some confusion around whether I really and truly had it or not. It was incredibly frustrating. One day, while in a medical building for an appointment for a completely different reason than my skin, I walk by an office with a big sign on the door: Psoriatic Treatment Center. I walk in, and the place is packed. Sure enough, there's one doctor in there who specializes in psoriasis. It's a four-week wait before I can see him, but I finally get in to see this guy, and immediately he tells me, without a doubt, that I have psoriasis and he starts me on a regimen of meds. I still see that doctor to this day.
Even after all of that back and forth, and all the conversations about psoriasis -- Did I have it? Did I not have it? -- it's still amazing to me that when, a few years later, I was diagnosed with psoriatic arthritis, not only was that illness not on my radar, but the possibility that I might have this form of arthritis wasn't on my radar. It came out of the blue. A bolt from the blue.
One morning I woke up and I was in so much pain that I could not get out of bed. Here I am, a working mom, I had a career, three teenage kids at home, and I'm literally crying because it was so excruciating. And what was really scary is that I had no recollection of hurting myself. I mean, this sort of pain must be from some injury, right? But then I start to realize that it's not really localized pain. It's the ankle, the wrist, the elbow, the knee. I couldn't move, and I'm like, All right, this is definitely not cool.
One of the first things I asked myself early on was, "Is this genetic? Is this something that's going to be passed on to my kids?" I start searching and investigating, and my own mother tells me, "No, nobody in my family ever had that." Okay, I think, maybe I'm the odd ball and I got it out of nowhere. After a while I learn that there is, in fact, a history of it in my family. And it might seem selfish, but I had a slight sense of relief knowing it didn't come out of nowhere. I sort of felt better knowing that there's someone I can blame for it, other than me.
I know how that sounds. And I know there's no such thing as "blame" with an autoimmune disease. But I'd be lying if I said I didn't feel a little bit of relief, knowing that I wasn't the first. Knowing that it didn't somehow start with me.
One important thing people with psoriasis need to learn is patience. You know you're going to go to a doctor, and you're going to talk about what you feel, but unless that doctor has gone through what you're going through, they're not going to really, genuinely understand it. They're an investigator, and so are you, because there's no cure. Right now, the only thing we can hope for is that someday, somebody or some team will create a cure. But until then, we're like other people who have diseases without cures. We're just waiting. And while we're waiting, we have to keep living full lives, whatever that looks like for each of us.