Happy New Year! A new year brings a lot of excitement, possiblities, and trepidations. With anything worth fighting for in life, facing down fears and anxieties takes a measure of courage.
For example, this past spring Lori and I visited the California State Capitol in Sacramento to lobby with the National Psoriasis Foundation for a continuation of care bill. Every time I go to the Capitol building I feel quite anxious. But I’m glad I didn’t let that opportunity pass because of my fears.
I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again. I’m trying to figure a way to work at church a bit less, and write more. The kids have big transitions coming too with the oldest moving on to university, the middle son graduating from high school, and the youngest moving on to senior year and college applications.
I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again.
I wrote this blog for Everyday Health about how psoriasis taught me to live courageously. I hope it’s an encouragement to you to face your next life challenge or obstacle with a strength of heart.
Living with a chronic illness like psoriasis takes courage. I learned that lesson as a child with psoriasis. The world is a big place for a 9-year-old. That’s when I started using phototherapy to treat psoriasis.
The closest phototherapy light box at the time happened to be about 30 minutes away at the medical center in Oakland, California. My mom, who didn’t drive on the freeway at the time, overcame her fears to take me to light treatments three times a week.
I didn’t really understand what was happening to me. They told me I needed “light treatment,” but that didn’t mean much to me as a kid. My mom dropped me off at the clinic, then headed out to get me a snack.
A nurse escorted me down a long hall through a warehouse area to the box in the back. I took off most of my clothes and put on strange green goggles. Once the nurse turned on the light, I waited until it clicked off.
I felt incredibly anxious the whole time. One time, I needed to go to the bathroom but didn’t know I could walk out of the box. I felt so embarrassed after the treatment that I never wanted to go back. When I got to school — about two hours late — my classmates teased me to no end.
Having psoriasis means more than putting on ointments, going to the clinic for the light box, and seeing my dermatologist. It takes courage to endure what you don’t comprehend, to face the unrelenting bullying and teasing from classmates, and to survive the anxiety and fear of uncertainty.
Having psoriasis means more than putting on ointments, going to the clinic for the light box, and seeing my dermatologist. It takes courage to endure what you don’t comprehend . . .
Taking on Challenges
Courage is not something that was God-given to me at birth. Generally, I am a timid person. I ultimately take on challenges that are before me, but I don’t necessarily look for them. If they find me, my first instinct is to run the other way as fast and as far as I can.
I once talked to a friend about the incredible anxiety I felt before speaking at a conference in England. My mentor wanted me to join the conference, so I felt obligated to go. But I worried about my skin while traveling overseas, about whether I could adjust to the 11-hour time change, and if they would like my presentation.
I looked to my friend to magically tell me something that would take away all the anxiety. He listened to me, then simply stated, “You need courage for your trip to England.”
His statement startled me. I thought I needed to get over whatever I felt, or to pray more. Maybe I could use a pill to calm me down. But I really needed to acknowledge that going to England for the first time to give a talk was just scary for me, just as going into a light box as a child terrified me back then.
Attending fourth grade with classmates who didn’t understand psoriasis turned my stomach each day. Trying a new medication with black box warnings about serious side effects isn’t easy, either. And not knowing how or when psoriasis will flare up keeps me on edge. All of these things need a measure of courage.
We’re Stronger Together
On March 17, 2016, the Food and Drug Administration (FDA) held a public meeting on patient-focused drug development for psoriasis. I wanted to join in person, but I could only watch the webcast. I imagined speaking in front of the FDA panel and all those in attendance in Maryland.
At first, I thought I would feel as anxious as I did going to England. But then I heard voices of people I knew. Voices of other psoriasis patient advocates sharing their stories of living with psoriasis. I had met some of them at conferences or through social media. They stood up and spoke for me, and the whole psoriatic community, when I couldn’t do so myself.
Shortly afterwards, I had my chance to speak up for psoriasis and for other patients denied medications by insurance companies. Out of the blue, a representative from the National Psoriasis Foundation (NPF) advocacy department emailed me. The subject line screamed, “Time Sensitive!”
The California Assembly Health Committee was holding a hearing early that afternoon on a bill that the Arthritis Foundation helped sponsor. I would only need to state my name and organization to go on the record in support of the bill, on behalf of the NPF.
During a quick phone call to brief me about the hearing, the NPF representative declared, “You are now a lobbyist!” At that moment, I became the most anxious lobbyist ever. I don’t typically drive down to the state capitol during business hours. What would I wear? Where would I park? Could I find the committee room?
Then I remembered the people at the FDA meeting in Maryland. Their courage became my courage. They were with me, just as I had been with them. As the saying goes, we’re stronger together.
An hour into the meeting, the health committee chair opened the discussion on California Assembly bill 2400 regarding “Prescription drug coverage: prior authorization and external review.” I stood up, walked toward the microphone, and waited my turn. I then stated, “Howard Chang, on behalf of the National Psoriasis Foundation, in support of the bill.”
That was it! The bill passed committee 12-2 to move on to the appropriations committee.
What happened might seem relatively small and insignificant. But no one truly knows what it takes to make it through a day in another person’s skin or shoes. Don’t let anyone judge you or make you feel small when it takes courage and determination to do what someone else may take for granted.
What happened might seem relatively small and insignificant. But no one truly knows what it takes to make it through a day in another person’s skin or shoes.
For me, it took courage to overcome the fears of decades. I went from a scared child in a light box to standing up and saying, “Me, too!” at the California state capitol.
What do you face today that takes courage and determination? How can you find the strength and support to live courageously today?
Verse of the Week
Be Strong and Courageous (Joshua 1:7)
Last quarter our Sunday school class at church studied Joshua. The verse that often stands out to me is found in the beginning where Joshua, the new general, is encouraged to be strong and courageous:
7 “Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go.
What a perfect verse to accompany all the hopes and goals we have for 2018.