Many people with psoriasis have found comfort—and friendship—by connecting with others who have it.(FOTOLIA)
Living with a skin condition like psoriasis can be a very isolating experience. Most people don't know much about it. Some worry that the disease is contagious and make rude or ignorant comments. And even people who do understand psoriasis may still not appreciate how it affects your life.
"Almost any patient with psoriasis will have an emotional response to the condition," says Joseph Locala, MD, an associate professor of psychiatry at the Case Western Reserve University School of Medicine in Cleveland and a psychiatrist at the university's Murdough Family Center for Psoriasis. People living with it often experience sadness, anger, and isolation, and some may even suffer from depression and anxiety disorders.
But experts say that developing coping skillswith the help of a support group, a mental health provider, or a doctorhas helped many people with psoriasis live happier, more comfortable lives.
Connecting with others who are in the same boat
"I think some people would feel like they're drowning if they didn't have [the group]," says Roy Poucher, 59, of Anaheim, Calif., who facilitates four support groups in his state.
Groups like Poucher's, many of which can be found through the National Psoriasis Foundation (NPF), dot the country and offer a variety of benefits.
Gatherings can be a time for venting and swapping experiences about therapies, doctors, and insurance companies. Some meetings involve presentations by dermatologists or hypnotherapists, or strategies for disease education and advocacy events. Others are purely social.
P.J. Leary, 48, of Raleigh, N.C., leads a support group too. Now she organizes field trips to barbershops and salons for haircuts, manicures, pedicures, and massages. The goal, she says, is to help members get over their initial unease and introduce them to service providers "who are very well-informed about psoriasis and don't make people feel bad."
For Elaine Grandoit, 61, of Arlington, Mass., being part of a support group in Boston provides a "sense of solidarity, of just being with other people who know what you're up against." She has fought mild or moderate psoriasis since the age of 20 and began attending group meetings two years ago. "Some of the time we're not even talking about our skin," she says. "We talk about life."
Next Page: Help from humor and the Internet
[ pagebreak ]Help from humor and the Internet
Many people with psoriasis have found refuge online at sites such as:
- PsorChat, a Yahoo discussion group
- Psoriasis Help Organisation, a message board run by people with psoriasis
- The National Psoriasis Foundation's message board
- WeArePsoriasis.org, a social-networking site
- The psoriasis message board at Daily Strength, where members also create and update personal logs, journals, and goals
When Ed Dewke launched FlakeHQ in 1996 to promote his book about living with psoriasis, he was inspired by the network of readers who began contributing to it.
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Hearing from others with psoriasissome suffering much worse than hewas inspiring, says Dewke, 57, of Midway, Ky. "I don't know whether it focused my attention on things that matter or unfocused my attention, but one way or another I appreciated it."
Much like Dewke, who feels that "humor has been my saving grace," Victoria Gardner Nye, 35, of Cambridge, Mass.cofounder of an NPF–affiliated support group in Bostonderives personal strength from finding occasion to smile at her situation.
"The other day we were at a Red Sox game," she says, "and I looked down at my hand and I noticed that there was a piece of plaque psoriasis on my fingerand I'm not kidding youit was the most perfect heart I have ever seen.
"I thought to myself, ‘I don't think my psoriasis loves me, but maybe this is its apology for being around for 19 years.'"
When to seek professional help
Some people with psoriasis develop depression and anxiety disorders that require specialized treatment with medication, psychotherapy, or both. In fact, researchers are exploring whether psoriasis and depression are caused by the same underlying factors, says Dr. Locala. Levels of inflammatory proteins called cytokines have been found to be elevated in both patients with psoriasis and patients with depression, which may suggest that the cytokine levels are a sign of a common biological process involved in both conditions.
If people with psoriasis feel that their depression or anxiety is intensifying, is beginning to inhibit day-to-day functioning, or is provoking thoughts of suicide or self-harm, they should ask their primary-care physician or dermatologist for information and a referral for a mental health evaluation, says Dr. Locala. Patients also can reach out to state affiliates of the National Alliance on Mental Illness, the American Psychiatric Association, or the American Psychological Association to find providerswho can range from social workers, counselors, psychologists, and psychiatristsin their area.
If patients with psoriasis decide to seek out a mental health provider on their own, Dr. Locala recommends that they inquire about the provider's credentials and whether he or she has experience treating patients with psoriasis or similar conditions.