How Finding an Online Community Can Help People Navigating Life with Psoriasis

Bezzy Psoriasis is a free platform for people living with psoriasis.

With psoriasis, one of the biggest challenges isn’t dealing with flares, itchy skin, pain, or irritation. It’s isolation.

“With this condition, there tends to be a great deal of focus on the physical effects of what it’s like to have psoriasis, but the mental health challenges are just as important, especially since they tend to get overlooked,” says Reena Ruparelia, who shares her experiences on her Instagram account, @psoriasis_thoughts.

Finding others who understand what you’re going through is so important.

According to a 2020 study, psychological stress and stigma are common among people living with psoriasis. These factors can significantly impair a person’s quality of life, especially if left unaddressed.

Connecting online can be a great way to feel less alone.

A 2021 study about Instagram use among people with psoriasis found that the platform can create a space for collaboration, highlight real experiences, and help those with psoriasis meet their emotional needs.

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How Bezzy Psoriasis can help

The free Bezzy Psoriasis community is a place for people to connect and share personal stories, treatment insight, and advice for navigating a new diagnosis.

In the platform’s forums, community members can participate in conversations around topics that range from relationships and work accommodations to finding the right healthcare professionals.

“It’s easy to get overwhelmed with all the facets of a psoriasis diagnosis. Forums do a nice job of separating out important topics. If someone is looking for guidance or support in a specific area, they know exactly where to go,” says Joni Kazantzis, the Bezzy Psoriasis community guide.

In her role as a guide, Kazantzis helps lead nightly live discussions relevant to living with psoriasis.

Topics include:

• diet and nutrition
• pain management
• medications and treatment
• flares and remission
• alternative therapies
• exercise
• meditation
• mental and emotional health
• navigating healthcare systems
• relationships
• symptoms
• complications
• daily life and hobbies

“I especially love that there’s a separate mental and emotional health forum because it’s an important topic that affects psoriasis patients, but isn’t something that is always talked about,” says Kazantzis. “There’s a lot of support in that forum, so members know they’re not alone and can find companionship.”

Nonjudgmental support

The breadth of experiences navigating healthcare and treatment is most appealing to Diane Talbert, a psoriasis advocate who is also an ambassador for the nonprofit Patients Rising.

Talbert visits the medication and treatment discussion forum often because she spent the first 40 years of her life struggling to treat her psoriasis.

A large part of that difficulty may have been unnecessary, she says. Even though Talbert consistently met with a dermatologist every month, she still had frequent flares. Sometimes as much as 70 percent of her body was affected.

She’s since found a treatment that works better for her psoriasis, and she’s determined to support others who might be going through the same challenges of navigating treatments that aren’t working.

“We need to get a better understanding of our disease, and part of that is knowing that every medication doesn’t work for everyone. You have to find the one that works for you,” Talbert says. “I appreciate the opportunity to share my experience and help others.”

Empathetic connection

For Jenny Parker, the Bezzy PsA community guide, the live discussions are particularly appealing because she loves being able to connect in real time.

For people living with a chronic condition like psoriasis, it can help to talk with others whenever they’re craving conversation — and connecting online isn’t any less powerful than talking in person.

“I love connecting with people who are going through a similar journey to me. It’s great to be able to check in with how people are feeling and coping in the moment. I feel like there is a lot of support there, and also room for growing, learning, and connecting,” says Parker.

She adds that Bezzy is a cozy little space on the internet where she can let her guard down and be vulnerable about what she’s experiencing.

“I like how safe it feels and how nurturing and kind the community is,” says Parker. “The goal of Bezzy Psoriasis is to be a place where people can feel confident confiding in others and sharing their stories. It makes me feel like I belong somewhere.”