I've lived with psoriasis and psoriatic arthritis for just about half of my life. I'm 42 now, and I was 22 when I had my first, sudden-onset symptoms. That was in February 1996. I was newly married to my first husband, and one night when he was out I was sitting on the floor watching TV -- remember it clearly, it was on an old console television set -- and when I went to stand up to take my dishes out to the kitchen, my legs simply couldn't bear my weight.
It took me something like 25 minutes to get from inside my house and out to the car to go to the hospital. At the time, they just told me I had a high rheumatoid count and that I had arthritis. But they really didn't know what kind. It was another six months before I was diagnosed with psoriasis and psoriatic arthritis -- and even that was something of a fluke. One day I was in my doctor's office and my regular doctor wasn't available but his colleague was. He walks into the room, looks at me and asks, "So how long have you had psoriasis?" That was the first I'd ever heard of it. It turned out he was a naval medical professional, and the sailors on submarines often get psoriasis because they're under water for so long, without exposure to the sun, so he was familiar with it.
Over the years there have definitely been periods when I've been incapable of moving because the joint pain is so bad. You know, I've experienced a lot of health issues in my life. I contracted rubella once when I was volunteering at a daycare facility. I had chicken pox twice during my childhood. I guess I was an overachiever. In 2014 I was in our driveway here and was bitten by a brown recluse spider. That exasperated my psoriasis, which led to 97 percent of my body being covered with sores and spots. I was in the hospital for four or five days that time. In the past two decades, I've been hospitalized more times than I can count. Oh, and I should probably mention that I'm also legally deaf. With all that, the chronic pain that's part of an autoimmune disease like this is really the hardest thing to handle.
But after a certain amount of time, I guess, you learn that you're going to have good days and you're definitely going to have bad days, and you just have to keep on. There have been times in my life when I was the only person who could take care of my three kids, and they're kind of my driving force, you know? When you have children, you find a way.
When you have a condition like this, learning as much as you can about it and speaking up for yourself is incredibly important. But it's just as critical that you remember that you're not just a specimen. You're not just your illness. You're still a person. A human being. I know that we, the patients, can sometimes get caught up in the idea that it's all about the disease, the disease, the disease. There's such a fine line between losing yourself in it, and protecting yourself with information.
My early involvement with the National Psoriasis Foundation -- I am one of the people who started the Chicago support group chapter of the NPF -- was a breakthrough for me. Being able to help other people who suffer from this is something I'm really proud of. I also learned to use strangers' curiosity about the disease -- especially children, who are so open about it -- as an opportunity to teach them about psoriasis and arthritis.
You know, little children will sit and stare right at you, and I'll often say to them, "I know, I look different, right?" And they'll just kind of nod, because they're shy or they're hiding behind mom or dad. And I'll be like, "Yeah. It's kind of itchy and sort of scaly." And they'll nod again, and I'll say, "You know what? It can't hurt you. It only makes me itch. Not you." If it's an older kid, I might explain that I have a disease called psoriasis. Most parents don't panic. In fact, I've had more than a few tell me, "I'm sorry about that, but thank you so much for explaining it." I really believe that what we fear most are the things we don't know, or don't understand. Just speaking plainly about things can sometimes do away with a lot of that fear.