It’s a common feeling among people with psoriasis: We don’t like to talk about it.
I felt that way for most of my life. But about a decade ago I went through some major life changes. They were the catalyst for overcoming my reluctance to talk about my psoriasis and inspiring me to volunteer with the National Psoriasis Foundation.
By volunteering, I want to help make people more aware of the disease – one that the average person still has little to no understanding about. I believe the more we understand about psoriasis, the faster we will find a cure.
I also want to remind people with psoriasis that we’re not alone. I know it can often feel that way, but there are a whole lot of people in our corner.
Thinking in terms of “we,” not “me”
When my psoriasis first appeared at age 13 in 1968, I was extremely upset about it. I felt literally tattooed as being ugly, abnormal and different. As a 20-something and a 30-something, I found out that there were many people who felt the way I did.
A study released on World Psoriasis Day in 2016 backs this up: For example, in the U.S., people living with psoriasis are 20 percent less happy than the average American living without it. Even greater percentages have low self-esteem and rarely feel confident.
But I still didn’t want to do anything or reach out to others. I was too focused on my career, working in a series of high-pressure jobs that made tremendous demands on my time and energy, and playing guitar professionally on top of it.
And I’ll admit it – I was selfish. I felt that since I had been “handicapped” with psoriasis, I deserved to indulge myself in pleasurable things whenever I could. Other people’s problems? Not my concern, even if they were the same as mine.
I didn’t even know there was a National Psoriasis Foundation until I was in my mid-30s. Even then, all I did was occasionally read a few articles on the NPF site.
Things began to change when I got married in 1991 and started a family. Thanks to my loving and understanding wife and kids, I began to think less in terms of “me” and more in terms of “we.”
I also became much more interested in learning about psoriasis for a very non-selfish reason: I was concerned that my kids might someday get it. After a few years, I became an NPF member but not an active participant.
The unexpected push into volunteering
The Great Recession of 2009 cost me my job. I was unemployed for the first time in 29 years. By a quirk of fate, I had also just begun taking a biologic, the first treatment that helped clear my skin.
I went from being consumed by corporate America to waking up one Monday morning having to start over. I had no job but clearer skin. Talk about a seismic shift in my reality.
I had lost a job I had given my all to, and for what? To be washed up in the economic low tide. Worse, I had taken the stress home to my family and was not much fun to be around. I was determined to change all that and devote myself to things I believed in, including working for myself, playing my guitar and volunteering for NPF.
I began going to meetings of NPF’s New York Division. I volunteered to help with their Team NPF Walk and other events. Being a PR person by trade, I helped increase our outreach to the media. I soon became the New York Division’s PR chair.
I can’t begin to express how rewarding it is to help NPF in raising awareness about psoriasis and being part of this community. I’m especially grateful to be able to support younger people with psoriasis. They have opportunities to get help that I and other older people never had.
As a volunteer, I’ve met many remarkable people – doctors, researchers, medical industry professionals, young people, parents, fellow NPF members and many people with psoriasis.
I’ve done everything from speaking at industry gatherings to rubbing elbows with top physicians to holding signs at events. I’m amazed at everyone’s dedication. It’s inspiring. It’s quite literally changed my life.
Sure, there are hundreds of worthy causes to volunteer for. But helping to find a cure for psoriasis is my cause. Check that – it’s our cause. And if you participate, I can assure you that you will make a difference.
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Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.