Vickie Dowling specializes in helping her patients cope with the emotional effects of skin disorders. She’s uniquely qualified for the gig: A psoriasis patient since childhood, she developed her first debilitating full-body flare in college, a time when many young women’s self-esteem and body image are already in flux. A chronic, noncontagious autoimmune disease in which skin cells turn over more rapidly than normal, psoriasis’ physical effects include patches of dry, flaking skin and/or irritated patches. But it’s the emotional effects of psoriasis that made me want to talk with Vickie: Sufferers report heightened self-consciousness, frustration, embarrassment, and anger. And given the emphasis on women’s appearance, it’s no surprise that women with psoriasis report all these emotions in greater numbers than their male counterparts. We talked about focusing on our gifts, the loneliness of skin disorders, the power of education, and how to literally be comfortable in one’s own skin—a goal that people with and without skin disorders seek. In her own words:
On Her History
Being a teen brings vulnerability around self-image under normal circumstances—adding a chronic visible skin condition amplified my self-consciousness. Entering college, I pretty much had a good self-image—I liked my hair, I had a good figure, and I had good skin. I was pretty spoiled, so to speak, with how I looked, and I kind of took it for granted. I think a lot of us take a lot of things for granted until we have something stripped from us. I don't think I can "what-if" [to think how life may have been different without psoriasis]. I can't roll back.
Not only was my skin inflamed literally from head to toe, I also lost most of my hair. You know how in high school yearbooks, they ask you a question, like what your prized possessions are? I said mine was my hair. So it was devastating—I felt like nothing looked normal. My feelings of sadness, loneliness, and isolation felt almost as if they were permeating my sense of being. I gained weight from medications and decreased activity. I had a limited collection of clothing. It felt pretty traumatic for that age.
Most of my girlfriends were supportive, even if they were ignorant—much like myself at the time. But they were busy students, and they couldn't really help me physically; I really became pretty physically dependent at this time. And many of my male friends simply fell by the wayside. Some of the men I had dated completely lost interest. I felt very lonely—and given my level of dependency, I had to move in with my parents on the opposite coast and a new place. I basically lost a huge portion of my support network.
My very first step to getting where I am now is when I received a brochure from the National Psoriasis Foundation, from my dermatologist. I really think that education is critically important. That education was the first piece of gradually learning that I wasn't alone. I was maybe 20 when I went to my first support group—I drove to L.A., probably an hour and a half drive each way, because I wanted to meet other people who had this. Somebody who knew what I was suffering from.
On the Power of Education
People are sometimes afraid of various disorders—and if it's a skin disorder there's often a fear of contagion. We're afraid of "getting" things. People in our culture are afraid of our mortality, and a disease or disorder kind of brings you face-to-face with limitations and mortality. There's also a curiosity—people don't know what to say when someone is different. People are often embarrassed to be seen looking, or to be looked at. People with amputated limbs, people with crooked teeth, people who are obese, who have facial deformities, spinal deformities, acne—all of these things, they share similar kinds of interest, curiosity, and fear from the public. Many people aren't going to be familiar with a specific condition, so it helps to come up with a pat answer so you feel comfortable, and you educate people. For psoriasis, I tell people my skin reproduces itself faster than yours does—yours takes a month to resurface and mine resurfaces every couple of days. Someone who begins to feel more comfortable in their own skin can remove that basic pat answer, maybe using humor if that feels comfortable. Humor relaxes people. As you begin to feel more comfortable with yourself and others, they will begin to feel more comfortable with you. If humor works for you, then you can share how stigmatizing or embarrassing your condition can be.
I was denied salon services once, when I went in for a haircut many years ago. Since that episode, I've frequently brought up the topic when I've gone in for a haircut, even before they begin. I used to take in National Psoriasis Foundation brochures for the stylists, because I didn't want to go through that experience again—it was humiliating. If you're proactive, you're taking the reins—you're taking charge to the degree that you're capable of. Now, when I bring it up, most stylists are like, "Yeah, we've had training." If you educate others, they can become allies.
On Literally Being Comfortable in Your Own Skin
A gift that psoriasis has given me is that I'm less concerned of what others think of me—both when I'm flaring and when I'm in remission. Of course I like looking good and I don't dress sloppily, but I'm not as concerned with my appearance as I used to be. Before I had the experience of psoriasis, I looked in the mirror more than I do now. I don't avoid them; I just don't seek them out. I don't typically wear constricting clothes; I wear a lot of natural fibers. I think it's also humbled me significantly, and has given me the compassion that I have for my patients. It's really helped me become more compassionate, because I have genuine empathy and actually understand how it feels to be 1) disabled, 2) have to deal with unpleasant treatment regimens, and 3) be concerned with my appearance.
It's also given me a sense of humor, both to help me cope and to help others feel more comfortable in my presence when I do break out. For instance, when I returned from my last absence from work, I joked about my "free chemical peel,” because my skin was constantly shedding—most people think I’m significantly younger than I am. In fact, many people who have psoriasis actually have beautiful complexions when they're not flaring, because they have constantly fresh skin. I try to focus on things like that, and work really hard at changing my perception of things. I reframe how I think about certain situations.
You have to learn to nurture yourself, first and foremost. There's a tendency to be self-critical and judgmental, and most of us place these burdens on ourselves as though they're obligations, instead of making a choice about it. Saying, "I want to do this, I know I'll feel better—my condition X will feel better and I'll be more comfortable" is going to bring you to a better, more comfortable, and healthier place physically, and probably a better, safer place emotionally. Once you do that, you can get into educating and volunteering—helping others helped me tremendously. When you're focusing on others it takes away the focus from yourself.
Another way to shift attention from yourself is to do relaxation exercises—one of the ways that those work is that you're shifting your focus, distracting yourself. Distraction is a great tool for self-care. One of the things that I talk to my patients about, whether they have health issues or not, is thought-stopping. I'll tell people to just say the word stop in their head, and that if they're in a place where they can say it out loud, to do that and clap their hands to place more emphasis on it. I tell them to think in as much detail as possible about a stop sign. Most people think about a stop sign as just a stop sign. But if you really think about it, it's octagonal, it has block capitals, white letters on a red background, the newer ones are kind of iridescent and the older ones have a flatter paint. The newer ones sometimes have a trim around the edge; there's a bolt or screw at the top and the bottom that's mounting them onto the metal post, and some of those metal posts are solid and some have little holes all the way down. There's a lot of detail there. And what does thinking about that do? It shifts your attention. It distracts you from focusing on your pain or discomfort—and that pain or discomfort can be physical or emotional.
You have to let yourself be sort of emotionally comfortable too. A lot of people with psoriasis have to pick and choose clothes that are going to be physically comfortable but allow them to feel less self-conscious. Many who have psoriasis chronically will hide it—they'll wear long sleeves, pants, long skirts, even when it's warm out or when it's irritating. They'll wear lighter-colored clothes. I'm wearing darker-colored things now that I've avoided for years and years. I love it! I actually went out and bought several black and navy sweaters because I hadn't been able to wear them in years. One of the things that I feel lucky about is that I've worked through some self-consciousness. I don't draw attention to myself, but I won't make myself uncomfortable for how I look.
You have to practice to become comfortable in your own skin. Just like when you're learning to walk as a toddler, or when you're learning to ride a bike, you fall down a lot. You've got to practice, practice, practice—and it's the same thing with being comfortable with yourself. It's not something that came easy to me at first. I can speak quite simply and easily about it now because I'm practiced at it, but it wasn't always easy. You have to recognize that it takes time, and you need to give yourself permission to make mistakes. Often, people believe they have to be perfect, even in building this skill, and that's not the case.