psoriasis

My Two Worlds

The National Psoriasis Foundation’s Volunteer Conference is held in Chicago this year. The first time I visited Chicago I went to Millenium Park where I took pictures of the Cloud Gate sculpture, or popularly known as ‘The Bean.’

This weekend I’m in Chicago for the National Psoriasis Foundation’s Volunteer Conference. On my last day before heading out to the conference, my colleague at church told me to have a nice vacation. I began to tell him that it would not be much of a vacation, but I stopped myself not wanting to explain my conference schedule to him.

I largely live in two worlds: one as a pastor/minister at a local church in a college town, and the other as a patient advocate/blogger primarily with psoriasis advocacy. The two worlds do not overlap much, but they do inform each other.

My Church World

As a minister for almost twenty years I primarily oversee a congregation of over one hundred in an ethnically Chinese church. My group consists mostly of second generation Asian Americans, though they run the spectrum from more culturally Chinese to more culturally westernized. Some, like my wife, are not Chinese but adapt well to the Asian setting.

dad translate preach
On Good Friday I spoke to 250 gathered in our Davis, California church. The Mandarin Chinese translator, Shirley, works with me often when I speak in a bilingual setting.

The three pastors of the church, together with four non-pastor leaders (called elders) oversee the direction and care of the church. My training includes a Master of Divinity and a Doctor of Ministry, which I earned last year. I am also an ordained pastor and elder of the church. So people could call me “Rev. Dr. Pastor Elder,” although most call me “Pastor Howard.”

In this church world, I advise and work with volunteers in all church functions. I do quite a bit of counseling, mentoring, speaking, hosting/visiting, teaching, and team building. I officiate weddings, funerals, baptisms, child dedications, and communion services.  It’s a full-time position and then some.

The church sits a block north of the University of California, Davis campus. My wife and I met at UC Davis as undergraduates, so it’s a homecoming of sorts for us when we moved back from Los Angeles in 2014. I enjoy the relative quiet of the small suburban, agriculturally based area of California’s Central Valley. With the university nearby we spend a lot of time with students and faculty/staff.

My Patient Advocacy World

My world as a psoriasis patient advocate started early and developed late. I learned to advocate for myself as a child, teen, and student with psoriasis. My parents, immigrants who worked day and night to provide for the family, left much for me to manage myself. As early as first grade I rode my bike to school and back.

dad's body paint
Novartis sponsored Natalie Fletcher to body paint three patient advocates to raise psoriasis awareness. She painted three doves on my back to represent peace that comes from faith.

Around that time, I received a psoriasis diagnosis. I couldn’t ride my bike to phototherapy or doctor appointments, but I did call the pharmacy for medication refills and applied medications myself. If I needed anything I learned to speak up, make a call, or get it myself.

Self-advocacy led me to speak up about my psoriasis, despite the seemingly constant bullying, teasing, and misunderstanding associated with a skin disease. It helped me to tell my story. I found more supporters than detractors, which continued to encourage me on the path of sharing openly and often about psoriasis.

The next step to begin blogging about psoriasis made sense in my mid-thirties. I answered the call to blog for an online health website called HealthTalk. Their psoriasis content included a couple patient blogs, webcasts, and other articles. I appreciated the site enough to ask if I could write for them.

The editor wrote back to tell me she did not want me to proselytize or write content too religiously focused or sourced. She liked my writing samples enough to take a chance on me. I learned quickly, though, that my two worlds would need to stay separate for a while yet. That blog on HealthTalk turned into The Itch to Beat Psoriasis on Everyday Health. I began to coordinate some of my work with the National Psoriasis Foundation at that time too.

HealtheVoices, the first of its kind conference for online health advocates, led me into a new phase of advocacy. I met other health advocates for the first time, including several psoriasis patient advocates. With psoriasis research and new medications coming online, the advocacy space opened to join blogger groups, and partner with health and pharmaceutical companies. [See Links to Blogs/Articles for more of my advocacy work and writing.]

Two Worlds Collide

For years, I didn’t mention my work as a minister, or use my Reverend title, in my psoriasis bios or writing. I wanted to be known as a patient advocate who lives with a severe chronic autoimmune disease first. But more recently I found other advocates sharing about their faith from time to time. When I asked Everyday Health about updating my bio, they welcomed the changes.

When I do head out for conferences I invariably end up talking about my faith or work. Almost every trip someone says, “You are a pastor, right? Can I ask you a question?” I’m ready to serve as a pastoral counselor at any time, even on a psoriasis related trip. Sometimes people ask me about my work as a minister.

At church, I often share about my health journey as an illustration of living authentically by faith in a broken world. I personally pray for strength to persevere, and even seek healing and relief from my conditions. Those at church know when I change medications, take trips for conferences, or organize local psoriasis events for the National Psoriasis Foundation.

They welcome my advocacy work as an extension of my work at the church. I appreciate their support and concern for my health. I’m also careful to use my vacation leave for psoriasis related trips so the church does not bear any undue burden for my advocacy.

In both these worlds I feel empowered to help and serve others, albeit in different arenas. That’s why I chose Inspire, Empower, and Advocate as my three themes for PsoHoward.com. I learned that my two worlds actual are both a significant part of me as an expression of who I am and what I sense my calling to be in this world.

2017 NPF National Volunteer Conference

As I write this I’m on the plane heading to Chicago O’Hare’s airport. Lines of thunderstorms hinder our descent from the west, so the pilot explained our path with take us farther north fist. I’m eager to land, get my ride to the downtown hotel, and settle into my room.

The next two days I’ll sit on a corporate roundtable panel, attend a Psocial Ambassador training session, lead a session for teens with psoriasis, table as a PsoSTRONG Ambassador (for LEO Pharma), and attend a reception and volunteer celebration.

This weekend is about psoriasis, but I’m looking forward to how my other world as a minister might come out in conversations and interactions too.