I was first diagnosed with an autoimmune disorder, Crohn's, when I was 12 years old, which means that long before my first psoriasis flare, when I was a senior in college, I was already familiar with the idea of living with a chronic illness. As it turns out, though, my Crohn's had been pretty quiet for quite a while when the first psoriasis symptoms hit, so even though I had accepted the fact that I had one chronic illness, the prospect of suffering from another one, out of the blue, was a real blow. My Crohn's symptoms were under control -- and then suddenly everything was out of control.
I reacted to the new diagnosis the same way that any 21-year-old would. "I can't believe this is happening." For me, though, it was more like, "I can't believe this is happening again."
Mixed in with all the other emotions that came with this psoriasis diagnosis -- frustration, anger, some fear -- there was also a feeling of relief. I mean, the initial psoriasis flare was pretty severe, and knowing what it was, and knowing that we could fight it, took some of the fear away. At the time, though, having this new condition to deal with really did feel unfair, like my body was piling on with the illnesses, in a way.
This might sound obvious, but one of the toughest things to handle about psoriasis -- aside from the discomfort and pain -- is that it's so visible. I'm not downplaying how serious a disease like Crohn's can be -- I've lived with it for most of my life -- but in some ways psoriasis is harder to handle. It was definitely harder for me to handle when I was first diagnosed. I was already concerned about leaving the safe environment of school, where I was surrounded by friends and didn't have that many responsibilities, and heading out into the real world. And here I was with spots and scales all over my body.
And the spots aren't minor annoyances. Infections and other residual effects often accompany psoriasis. I think there's a general perception out there that psoriasis is more a nuisance than a disease. People think, "Isn't there a lotion for that? Can't you use something topical and get rid of it?" But the fact is I'm susceptible to so many other problems if I'm having an outbreak, because the sores so easily get infected. My body is attacking itself from the inside. It's not a cosmetic issue. It's not something that you can just slap ointment on and it goes away.
One piece of advice that I wish someone had given me when I was first diagnosed is pretty simple, but hard to embrace when you're young: don't feel like you have to explain yourself to others. For me, especially in the very beginning, I always felt like I had to be either wearing something that covered my spots or, if they were visible, that I should explain what was going on. But here's the thing: you don't owe that explanation to anybody. It's your body. It's personal.
Yes, there will be days when you're going to have flares, or you're not going to feel good. You're going to have infections. But it will get better. There will be periods of relief.
Something that's really important to me now is the work I do with a national organization called Girls on the Run. We meet twice a week and we work on everything from physical and mental health to self-confidence and body-image issues. At the end of the session, we run a 5K. It's really meaningful for me because I realize that these girls need older female role models who aren't on TV. They need real-life people who have jobs and values and loved ones and who struggle and overcome challenges on a daily basis and who can tell them twice a week that they're doing a good job. Because one thing I've learned in my years since college is that even if, as grownups, we don't really know what we're doing most of the time, we can still help each other along the way.