4 Ways to Meet Other People with Psoriasis
Psoriasis is not your average autoimmune disease. Its visible symptoms, like scalp plaques and scaly skin patches—can make you self-conscious, and take a social and emotional toll. Staying on top of your treatment plan can help keep psoriasis flare-ups at bay—and, in turn, boost your self-confidence and quality of life. Connecting with others living with psoriasis, who understand what you’re going through, and who can share tips and advice for how to thrive with the condition, can also work wonders.
“We often overlook social support as an aspect of health,” says Julie Shafer, PhD, a clinical psychologist based in Portland, Oregon. “But feeling lonely or alone is really detrimental and a major contributor to how severe illnesses are.”
Simply put, human beings are social by nature. “We have this innate need to feel seen and understood by others,” explains Dr. Shafer. “Everyone needs a good support system—like friends and family—to feel supported overall. But someone with a chronic illness really benefits from connecting with other people who understand their condition in a way that can only be understood by someone else who is also living with it.”
That’s why it’s important to establish a psoriasis support network. “Reaching out to others and having support has definitely helped me manage the emotional and mental aspects of my disease,” says Alisha Bridges, 33, who was diagnosed with psoriasis at age 7, and is now an advocate for the condition. “I know that I’m not alone. I know when I’m having a rough time, there’s someone out there that understands exactly what I’m going through—and that gives me comfort.”
Aside from providing emotional support, connecting with other people who have psoriasis can give you quality, crowdsourced information. “My support network also really helps me when I need to ask questions about certain treatments, or certain doctors, or natural remedies to try,” adds Bridges. “It’s always good to get that type of information from a fellow patient, because we trust each other.”
Here are five ways to connect with other people who have psoriasis.
1. Online Support Groups
You can meet other people with psoriasis in the comfort of your own home—or wherever you are, really. “There are websites that are specifically dedicated to those living with psoriasis,” says Bridges. That includes Kopa, of course. Our community allows you to easily connect with others who are living with psoriasis for support and camaraderie, as well as to share your own experiences and knowledge. Getting online is simple and can instantly make you feel less alone.
2. Local Support Groups
For additional support, you may want to join an in-person group. “Your doctor can be a good resource who knows about support groups in the area,” says Shafer. “You might also be able to find groups of people meeting in person through sites like Meetup.com. If there isn’t one in your area, start one—you never know how many people are out there looking for a group.”
If you’re having trouble finding what you’re looking for, Shafer recommends broadening your search to groups for people with other skin conditions, such as eczema, rosacea, or even lupus. “If you have a visible skin condition, you’re going to be experiencing some of the same stigmas, even if the actual condition isn’t the same.”
3. Social Media
Don’t underestimate the power of social media. “Platforms like Facebook, Instagram and Twitter are other good places to search,” says Ashton Frulla, a Yale-trained dermatology-certified nurse practitioner at Entière Dermatology in New York City.
Wondering where to start? “Search for the term ‘psoriasis’ on Facebook, and a bunch of groups will pop up,” explains Bridges. These groups allow you to connect with people living with the condition through the comments, and to interact with them through posts.
“You can search hashtags, as well—like #psoriasis or #psoriasiswarrior—to see who else is using that hashtag and connect with them.”
4. Events and Volunteer Opportunities
Don’t be afraid to get involved. “The National Psoriasis Foundation (NPF) holds regional activities and advocation events for those with psoriasis,” says Frulla.
Joining efforts to advocate for psoriasis—like walkathons and other events—can help you meet other people who have the condition while spreading awareness and raising money for psoriasis research.
“I’ve been doing the walk for psoriasis with Team NPF in Atlanta for the last five years,” says Bridges. “Every year, there are hundreds of people with psoriasis who come out to those walks, which gives you a chance to be face-to-face with people living with the condition,” says Bridges.
How to Make the Most of Your Psoriasis Support System
When it comes to establishing a psoriasis support network, take time in your search to find exactly what works best for you—and don’t be afraid to cut ties with a group that isn’t giving you what you need. “If it’s just a group of people getting together and complaining, then it can become a real downer, and that’s not helpful,” says Shafer.
Once you do find a support group that fits what you’re looking for, it’s important to participate. “If it’s an online forum, get in there and post a comment. If it’s an in-person meeting, attend,” says Shafer.
Though Shafer does acknowledge how difficult it can be to participate, at first, and the fact that it may take a while before you feel like you’re truly a part of the community. “Hang in there—don’t just go to one in-person meeting once and say, ‘That wasn’t for me.’ Keep going.”
And if you find one or two people you really connect with, take the initiative and reach out. “Don’t wait for them to come to you,” says Shafer. “People are so busy, and oftentimes shy about reaching out. They don’t want to bother other people. But if you find somebody that you connect with, you’re going to be as much of a support to them as they are to you.” You may find that you enjoy meeting for coffee or talking on the phone with those people for an even closer friendship. You might make a new gym buddy or lunch pal.
While the thought of putting yourself out there may be intimidating, the results can be priceless. “People living with a visible condition like psoriasis are a unique group of people,” says Bridges. “We realize the importance of compassion and empathy, and what ‘beauty is only skin deep’ truly means.”
According to Bridges, there’s nothing to be afraid of. “Regardless of your age, size, background, ethnicity—there’s someone out there with psoriasis that will be able to relate to you.”