In one particular way, I was lucky when I was diagnosed, because I was one of the few people I know who had no problem getting an accurate diagnosis almost immediately. I was 10 years old when I started getting some large plaques on my legs. My parents took me to the doctor and the first dermatologist I saw diagnosed it as psoriasis. Of course, working in the community and meeting other people with the disease I've heard horror stories from people who were misdiagnosed for years. I was hugely fortunate that that wasn't my experience at all. My first doctor was familiar with it, he knew it wasn't eczema, and that was helpful in getting me on the right track right from the start.
Remember, I'm only 10 at this point, so my parents are the ones really researching this after I'm diagnosed. I'm sure they tried to explain it to me, but it wasn't really on my radar. To me, it was just this annoying thing that I had to deal with. Besides, at first I can't say that it really bothered me. I definitely had visible spots, but I wasn't covered like some of the kids I meet now.
When it started effecting my scalp, that was really obnoxious. Even then, though, I remember being much more concerned about how annoying it was to put on my medications every night. It was a lot of really smelly, and sticky, so I was far more worried about my hair smelling than I was about having a chronic condition -- a concept that I couldn't really even get my head around. I also didn't really experience a lot of teasing, and now, when I think back on it, I am so grateful for that. I meet a lot of people who tell me that the teasing was relentless, they got kicked out of places when they were younger, all sorts of terrible experiences. I was maybe a little more careful about the situations I got myself into. For example, I didn't really play sports, because I knew that would mean wearing shorts all the time. I didn't go swimming at parties because it would be embarrassing and I didn't want to deal with it.
That's not to say that I wasn't completely aware of my psoriasis, or that it wasn't visible, because it was. But I never had issues with kids teasing me in elementary school, or anything like that. I can't imagine how painful that must be for anyone who had to go through it. Or for anyone who might be going through it today.
Even though I currently have a moderate form of psoriasis, I'm thankful that I understand how debilitating it can be for other people. I'm also lucky that my condition is not so severe that it prevents me from doing the things I want to do in life. I think maybe being diagnosed as a child might help, too, because it's sort of always been with me -- whether I wanted it along for the ride or not!
Gradually I found my own voice and was able to talk about the disease in a way that didn't come across as confrontational, or defensive. If I notice someone looking at me and clearly they're noticing my skin, I might say, "Hey, what do you like to do on the weekends? One of my hobbies is to volunteer with an amazing organization, because I have this illness." In my opinion that's a much easier way to share that you have a chronic illness, instead of having to back track after meeting someone and being like, "Oh, yeah, this might be awkward. But I promise you won't catch anything!" Instead, I share the story of how and why I'm sick, right from the start.
In my role as an advocate and as a volunteer with the National Psoriasis Foundation, as well as with my work in the medical field, I've learned that to a certain degree it doesn't matter if someone has an excruciating psoriatic arthritis flare-up, or if they just have a few spots or plaques on their skin -- I try and handle their worries and their anxieties without judgment. Maybe someone has had a history of being misdiagnosed, and finally they've been given a diagnosis of psoriasis and understandably they're freaking out. If they come to me, looking for advice or just a sympathetic ear, I'll listen, I'll urge them to educate themselves as much as they can, to advocate for themselves. But I won't treat their concerns lightly -- no matter what. It takes a person with psoriasis to understand what someone else with the condition is going through. It's important that we're there for each other.