Send Me More Stories About Chronic Illness
This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.
Ever since my sophomore year at university, I wanted to become a church minister. Up to that point I didn’t have a clue what I wanted to do when I “grew up.” But that summer, through a mission project in San Francisco, I discovered my passion for spirituality and helping others. After that, motivated by a new sense of purpose, I worked diligently to complete my undergraduate degree with an eye to apply to graduate seminary education. And I wasn’t going to let anything get in the way of reaching my goal… especially my stubborn, severe case of psoriasis.
The dermatologists at the University of California, San Francisco (UCSF) first diagnosed me with psoriasis at nine years old. The disease inflames the skin by overproducing skin cells, leading to raised, red, itchy plaques that often flakes off in silvery white scales. Psoriasis is the most commonly diagnosed autoimmune condition, with about eight million people living with it in the United States alone, but despite this, it is rarely talked about, especially publicly.
My case of psoriasis is considered severe because it covers over ten percent of my body surface area. Even though I tried to hide it, I was always self-conscious about it. I could feel people staring at the visible patches on my hands, scalp, ears, legs, and arms, and imagined what they were thinking: is he contagious? Can I catch it?
I did everything I could to hide my condition, even wearing long pants and sleeves in the summer. You wouldn’t catch me dead at a public pool. Even so, I took an overcomer’s attitude in life believing I could do anything I set my mind to.
The Worst Psoriasis Flare-Up
Despite my ongoing battle with psoriasis, I completed seminary and successfully interviewed for my first church position as an associate pastor in the San Francisco Bay Area. Things went well, and I felt my life was on track, but five years later, my psoriasis spiraled out of control, and I found myself virtually covered from head-to-toe with unsightly flare-ups.
I tried in vain to find any semblance of relief. I couldn’t sit still, or focus on my computer, for more than a few minutes, due to the discomfort and inflexibility of the inflamed skin. I felt self-conscious when meeting parishioners, who couldn’t help but notice the plaques covering my skin when we shook hands. At nights, I battled insomnia from the intense itchiness; during the days, when I was trying to fulfill my office hours, I was lethargic and listless.
Psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?
At that point, my dermatologist told me he no longer felt he could handle my case alone. He referred me to a preeminent psoriasis specialist back at the UCSF Psoriasis Treatment Center for a second opinion. The nearest appointment was two months away, but my psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?
Howard Chang.
Should I Quit My Job?
I remember the exact moment that psoriasis flare broke me down emotionally. I was sitting at my desk in the living room, trying to work on my laptop after dinner, when I suddenly brought my hands up to my face and began to sob.For the better part of an hour, I cried, until my wastebasket overflowed with used tissues. Concerned, my three young children took turns trying to comfort me, with a hug or a glass of water. I felt sorry they had to see their father in such a sad state, but I just couldn’t take it anymore.
Later that evening, I decided to resign my post at the church. I felt hopelessly inadequate to perform any of the duties expected of me at an acceptable level. Worse, I thought that if I continued on my current course, I might have to undergo the humiliation of being fired. I knew my hire split the leadership, with one deacon leaving the church a few months after I started, and I had since been grilled about dropping attendance numbers in the church group I oversaw. And that was before I had head-to-toe psoriasis. Why would they possibly keep me on now?
The next day I drafted my letter of resignation and made an appointment with my supervising pastor to let him know my decision.
I had head-to-toe psoriasis. Why would they possibly keep me on now?
Finding Support For Psoriasis
But my resignation did not go as planned.
As I walked into the meeting with my pastor, I imagined how it would go. I would explain to him all the ways in which keeping me on staff weakened the team. The pastor would then tell me how sorry he was I felt that way, but of course, he understood my decision, and even agreed with it. It would be best for everyone if I moved on.
But that’s not how it went. To my great surprise, the church’s leadership wouldn’t accept my resignation. The pastor wouldn’t even take it from my hand. Instead, he showed compassion. He asked me how my psoriasis was affecting my work, and how he and the staff could support me so I could make it through this difficult time.
My church’s support wasn’t just empty words. It turned out one of my colleagues had a family relation to the dermatologist I needed to see at UCSF. She got my appointment moved up with him to the following week.
To my great surprise, the church’s leadership wouldn’t accept my resignation
Moreover, I was immediately granted a three-week leave of absence, to rest, recover, and get away from the stress that contributed to my psoriasis flare-up. I decided to take a seventeen-day cruise through the Panama Canal with my parents and ten-year-old daughter, which in addition to the relaxation it would offer would allow me to sunbathe: an ancient remedy for many skin conditions.
During that cruise my immune system finally started calming down with some help from a new treatment prescribed by the UCSF dermatologist. The sunlight not only helped to improve my mood and skin, I also saw it as a symbol of a new way of seeing my psoriasis and work.
The Unintended Benefits Of Psoriasis
For decades, I saw psoriasis as an enemy to overcome. I hid it as much as possible from others, not wanting their sympathy or pity. Wanting to be ‘normal’, I pretended I didn’t have psoriasis. If someone had asked me what benefit I received from having psoriasis I would say absolutely none. But after I returned from the cruise, I found myself better able to accept my psoriasis. Sure, I’d rather not have it, but like most of the hardships we are burdened with in our life, there were ways in which it was a blessing in disguise.
For one thing, psoriasis allowed me to truly see how strong the support of my community was. During my most recent attacks, I had feared they would resent me for not being able to do more for them. I saw my role to help others, not to be helped: I officiated their weddings, visited them in the hospital, and oversaw the burial of their loved ones, but I didn’t think they had any obligations to me. But that’s not the way they saw it. My church–leadership and parishioners both–believed it was time to give back, with one colleague even going so far as to offer me a free flight to Toronto to see a well-known Chinese herbalist who specialized in skin conditions. I grew closer to those in my church community as a result of the shared experience.
My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases.
My condition also brought greater awareness to those living with chronic health conditions. I began to regularly share about the ups and downs of my experience with psoriasis when speaking on Sunday mornings or writing newsletters to the congregation. In the church where I worked, health conditions were often kept secret to avoid the questions, embarrassment, and unwanted attention that they might bring. My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases. It even turned out that a few church members had their own skin diseases, which they had never told anyone about.
Through my church’s support during my psoriasis nightmare, I became a better person and a better pastor.
Finally, through my church’s support during my psoriasis nightmare, I became a better person and a better pastor. A lot of times when someone comes to you with a problem, you want to fix it for them, but that’s not usually what they’re after: tangible help is nice, yes, but what they really want is is your understanding and empathy. By following the example my church community set, I was able to better show compassion for my fellow parishioners, supporting instead of trying to fix, and listening instead of minimizing the feelings of others.
In my worst psoriasis flare-up, the people closest to me showed me support and kindness I didn’t feel I deserved—especially in not letting me quit my job. Through them, I learned that my success depends not only on me, but also on my community.
I wouldn’t have it any other way.
