The Power of Building a Psoriasis Support Community
Psoriasis can be an isolating and disabling condition. Who wants to answer twenty questions about those red, flaky plaques on your skin when going out? I might rather stay home and watch TV! Sometimes I do feel down about the state of my health and don't want to talk about it with anyone. When my psoriasis is active and spreading I don't even want to wake up in the morning to go to work.
A newly diagnosed patient told me that he doesn't travel as much as he used to since he had a psoriasis flare on a trip overseas. He now has the time and resources to travel, but the impact of psoriasis on his lifestyle keeps him from enjoying spontaneous travel. If he's on phototherapy treatment, he can't take it with him where he travels. Packing all the creams and topical medicines creates inertia as well.
Psoriasis impacts one's life in so many ways—not only physically. It might even cause you to feel weak or less like yourself than before.
In a previous blog entry, I talked about how I became PsoSTRONG™ through joining up with and reaching out to others. Last July I went to my first National Psoriasis Foundation (NPF) volunteer conference in San Francisco. I knew about previous conferences, but never went because I wasn't sure if I'd fit in or if I would know anyone. But this last one happened to be in my backyard—near where I grew up, and only ninety minutes from where I currently live.
That entire weekend I didn't feel awkward at all. In fact, I felt like I was with family. You know how it feels when you walk into a room of people who have a common hobby as you, a passion for a sports team, a shared hometown, or a cause that you believe in? I felt at home at a conference of a couple hundred people with psoriasis, most of whom I'd never met before. I learned quickly that they too knew the dilemma of whether or not to wear shorts or short sleeves in the summer with psoriasis covering arms and legs. We could relate to the hard decision of taking a new medication while fully aware of long lists of side effects.
That conference showed me that getting connected with others who have psoriasis helps you build a community of support. Going to local psoriasis events like educational seminars or walks to raise awareness connects you with the psoriasis family too. Another way to connect is virtually. I've met others with psoriatic conditions through blogs, Twitter, LinkedIn, Facebook, and online communities such as TalkPsoriasis with about 75,000 members. Some have become great friends, colleagues in psoriasis advocacy, and my personal supporters.
Others who don't have psoriasis can become part of your support network as well. It's true that nobody will ever know exactly what you go through. My wife is my best friend and greatest support. Lori doesn't have psoriasis herself, but she's willing to try to empathize and understand. She makes life easier for me by taking some of my responsibilities and making sure I get enough rest when my psoriasis isn't doing as well. Other friends ask me how my skin is doing and actually want to hear the truth about it. I truly appreciate their support too.
Another source of incredible support includes my doctors and nurses. It hasn't always been the case unfortunately, but with my current medical providers I feel they truly care about me. It's a two-way relationship with my dermatology teamwhere I open up my life and feelings to my doctor and his medical residents and students. They in turn share something of their lives and show a great deal of compassion and care when I go to clinic appointments. I know if I message them afterwards with a follow-up item they will reply quickly in a way that calms my nerves.
It takes a community to live well, even thrive, with a condition that can become disheartening like psoriasis. I admit it takes take courage, initiative, and effort to reach out to build that support base for yourself. But if you do, you'll find that you can make it through just about anything in life or with psoriasis knowing you're not alone.
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.