Build Your Psoriasis Support System
By Kara Mayer Robinson
Reviewed by Neha Pathak, MD on January 15, 2020
Online Support Networks
Many psoriasis organizations have internet-based communities where you can share information about symptoms and treatments, post specific questions, get advice, hear stories, and share your feelings.Lara Robicheaux, 35, who lives in Austin, TX, says she would check into her online group every day. “It was useful to hear about other people going through similar experiences. It was also helpful to read about medication side effects, social stigmas, diets, and similar things,” she says.Some groups, like the National Psoriasis Foundation (NPF), are solely dedicated to building communities and offering information specific to the disease. Other online patient communities host groups for many different conditions, including psoriasis.
It may not be the first place you think of for psoriasis support, but if you look in the right places, you may find inspiration.But be aware that not all psoriasis advocates and influencers are trustworthy. “Information on social media can be hard to interpret. Some is useful, but some is unfounded or even dangerous,” says Colby Evans, MD, a dermatologist in Austin, TX. “Checking with your health care provider is always a good idea.”Gemma Boak, 36, tried a few online forums and groups before settling into one she likes. “In some Facebook groups, I would ask for advice about a steroid cream and have someone telling me I ‘just need to go vegan’ or ‘heal my gut,’ or some other personal opinion I didn’t ask for or need,” she says.Eventually she found a group she says has knowledgeable administrators and a respectful, open-minded community.“On Instagram, I found #getyourskinout,” she says. “It literally changed my life — I felt like I had come home. Everyone who posts is so positive and supportive, and they show pictures of themselves braving the world with their psoriasis facing outward. Finding somewhere that celebrates the psoriasis life is really special to me.”
In-Person Support Groups
Meeting face-to-face can be powerful. “It’s more personal,” Chheda says. “You can connect with people who are also suffering from psoriasis and share your own experiences in a more intimate setting.”In-person support groups also tend to meet consistently over time, which is good for long-term support.To find a local support group:Ask your doctor.Call your local hospital or health care center.Look for local chapters of national psoriasis organizations.Or you can start your own group. Diane Talbert, a psoriasis and psoriatic arthritis blogger, patient advocate, and speaker, started groups in Maryland, Virginia, and Washington, DC.“My first meeting was 10 people. For the first years, I had my meetings at libraries and community centers. I ran a free ad in the newspaper every week. Eventually my group grew to 150 people. I’ve had doctors, nurse practitioners, and rheumatologists come speak at these events,” she says. “I did this for 10 years and I had the best time of my life.”
Events and Activities
Sharing information and stories is just a start. You can also find events and other opportunities for people with psoriasis.Clinical trials. Some online communities list clinical trials looking for volunteers. You can also check clinicaltrials.gov, the federal government’s resource for research studies that are testing new treatments.Volunteer opportunities. Some groups host programs to help others and raise awareness about the condition.Meet-ups and special events. These offer a chance to meet people and make friends with others in your area, Evans says. You can also get involved in educational events to meet people and learn the latest in psoriasis from experts.Bonus tip: You can also connect with health care professionals through the psoriasis community. Sometimes they join in online message boards and discussions. You can also connect with them in support groups that bring in speakers or advocates.