Last year I took on a new volunteer role with the National Psoriasis Foundation (NPF): I’m a One to One mentor. With my busier schedule after starting a new role at work, I looked for a volunteer opportunity where I could maximize my impact with my limited time.
I’m glad I joined this valuable NPF program. Becoming part of the support network for those newly diagnosed with psoriasis has been a rewarding experience.
Navigating psoriasis can feel like being dropped into the wilderness without a map or GPS. Sharing my experience and encouraging others as they embark on their psoriasis journey gives them a point of reference as they take steps toward managing it well.
My experience as a One to One mentor, however, is not just selflessly giving to others. In a previous blog I outlined five ways volunteering benefits my life. All of these apply to my newest volunteer role. But there’s another benefit I can add after mentoring with the NPF: inspiration to better manage my own psoriasis.
As someone who has lived with psoriatic disease for more than 45 years, I know how easy it is to get stuck in old patterns. Here are three ways those I’ve mentored in the One to One program have stretched and challenged me to keep growing.
1. (Re)Engage in Healthy Lifestyle Changes
Those I’ve met through One to One invariably talk about lifestyle changes in addition to what is prescribed by their physicians.
As the old-timer who feels like he’s tried every diet, exercise plan, and alternative treatment for psoriasis, I just nod and smile. I don’t get too excited or hopeful about the latest trend or fad that promises to cure or greatly diminish my severe psoriasis.
Still, I know the diet that works for me and when I need to get out to exercise. After a One to One conversation, I felt motivated to get back to my strength exercises. I normally get out for walks or the occasional jog, but I haven’t used the parcourse at the park across the street in months.
Inspired by One to One matches who pushed themselves to bike, do yoga, and hike, I recently went on a run and used the pull-up and push-up bars. The next day, after my walk, I did stomach crunches and leg lifts.
It’s easy for me to let those healthy lifestyle routines slide. One to One has motivated me to get moving again.
2. Build a Community of Support
As an elementary school child, I felt isolated by my new psoriasis diagnosis. I already felt like a minority as a Chinese American kid. Having psoriasis made it all the clearer that I was different from the other kids.
Psoriasis changes your life. How you respond to a psoriatic disease diagnosis sets you on a course that determines how well you will cope with it.
I started out by isolating and turning inward, for years not talking about psoriasis with others outside of my family.
I came out of that emotional and relational shell slowly in college. Friends, including my future wife, Lori, showed empathy and provided safe spaces where I felt comfortable to talk about psoriasis.
Building a community that supports you through a new psoriasis diagnosis is invaluable. I’m impressed with those who sign up for a program like NPF One to One to meet with someone whom they have never met before to talk about something that took me years to open up about.
The couple of years before joining One to One, I had retreated into isolation with my psoriasis. I felt like that child once again who didn’t want to talk about it.
Thanks to the courage and initiative of those who are taking the chance to talk to me about their new psoriasis diagnosis, I’m opening up again to communities that provide vital support in my psoriasis journey.
3. Test and Respect Limits
I never wanted psoriasis to limit me. In fact, I tried to do what my peers did and do it better. Pushing limits, however, often led to a mess with my psoriasis and health.
Studying harder for exams led to less sleep than I needed. Taking on an extra project to get ahead left me falling behind on stress reduction. As I grew older, I became more afraid to take risks and test limits.
Some of the people I’ve met through One to One are deciding whether they need to make changes to their work pace. Others are considering how to prioritize relationships as they adjust to new treatments and lifestyle choices.
I appreciate how they are managing and respecting limits. One attended an event but chose to go for half of the time. Another wanted to bike more and found a way to do so, even when they couldn’t bike outside in harsher weather.
These conversations gave me an idea about travel, something I’ve enjoyed since being a geography major in college. Recently, I’ve felt that travel is too much of a hassle with psoriasis. I’d grown tired of packing medications and moisturizers or scheduling biologic injections around out-of-town dates.
This summer, however, I’m taking three shorter trips that don’t feel as overwhelming. We’re choosing places that will be good for my overall health and skin. One to One is showing me I can still do what I enjoy with a few creative changes.
Those newly diagnosed with psoriatic disease have unique challenges. I’m grateful for how we’re stronger together, and we never stop learning from each other how to be our best while living with a difficult condition.
