I once visited a potential volunteer for the National Psoriasis Foundation (NPF) walk in Sacramento, California. I figured the appointment would be all business as we set aside half an hour to talk about their joining the walk team. Instead, we chatted longer than scheduled, sharing all kinds of connections and stories about psoriasis. I found the positive energy and enthusiasm infectious. Others I met with mentioned how they wanted to volunteer because they appreciated how the walk brings together people affected by psoriasis. They talked about how for years they hadn’t met another person with psoriasis. I could relate to their sentiments. I’ve lived on that lonely island myself, far removed from others who could understand the day-to-day concerns that psoriasis brings. Where does inspiration come from? While it does come via unanticipated ways, people, and situations, I’ve discovered that there are ample opportunities to find inspirational voices when I need them.
Psoriasis in Publications
One of my first exposures to others with psoriasis came through an NPF publication. I enjoy reading interviews about people living with similar health conditions that I live with, confronting situations I’m facing. Its monthly magazine, Psoriasis Advance, and periodic emails share stories of people who aim high and overcome to run marathons, climb mountains, tackle low self-esteem, or reach out to others. I’ve read other publications, such as those in my dermatologist’s office, that also chronicle the voices of those living well with psoriasis.
Patient Blogs and Social Media
I started blogging more than 10 years ago when I was inspired by other psoriasis bloggers. They opened their world to me. They shared personal experiences ranging from the emotional challenges of living with psoriasis, to various treatment options that I wondered about. With the proliferation of smartphones and mobile media, a blog or social media post relating a personal experience with psoriasis is only a click away. Hearing from another person with psoriasis might just be what is needed to find the inspiration to take the next step toward well-being and wholeness. Recently, a reader emailed me to share how a recent blog I wrote motivated her to take action for her health in a way that she’d put off for some time. What struck me is how she valued another patient’s perspective and story.
Online Communities
Over the years, I’ve joined online communities focused on those living with psoriasis. One, called TalkPsoriasis, is quite large with almost 150,000 members. Social media groups, such as those on Facebook or Instagram, also connect people with psoriasis to lend support and share ideas. I’m amazed at the wealth of shared experience online communities provide. When someone asks a question about a treatment, typically others who have tried that therapy tell their stories. They might also add a word of encouragement or spur ideas to try something different or new.
Local Events
Local psoriasis events provide face-to-face interaction. At the annual walk event that I organized, we invited healthcare providers, pharmaceutical representatives, sponsors, caregivers, and volunteers to participate. Interactions with a variety of people related to psoriasis care stimulate my thinking and help me see my situation from different viewpoints. Other events might provide educational opportunities, such as a chance to hear a physician speak, or social settings to meet others with psoriasis. Joining an event or participating in a local psoriasis gathering could be a spark. An interaction there could spur a connection or thought that encourages, motivates, and inspires. Other places that I’ve found inspiration include my home and family, and my faith community. In fact, you can find inspiring places and voices all around when you learn where to look and how to listen. Tune in to them and you just might find what you need to keep running the long race that is life with psoriasis. You can read more about my experiences in my blog for Everyday Health and on my website.
