What Makes Me psoSTRONG™?
I couldn’t wait for my dermatology appointment at UCSF Medical Center’s Psoriasis Center ten years ago. The previous few years felt like a downward spiral from one failed psoriasis treatment to another. You know you are desperate when you are willing to try that medication once used years ago, that nobody’s heard of. You know you are at the end of the line when you are ready to quit your job feeling depressed and irritated. When you can’t even get through a work day.
I knew I had just about run out of options with my current dermatologist. Thankfully, he suggested referring me to UCSF. The HMO covering my insurance does not quickly approve $600 consultations. Not now, not ten years ago. But they knew what I knew: if I didn't receive expert care quickly, I would hit bottom both physically and emotionally.
When the dermatologist finally came into the exam room, he confidently said he could help me. I just sobbed. The nurse had assessed me at 95 percent covered with red, inflamed, flaky psoriatic skin. How could I come back from almost full skin coverage? The doctor gave me two options. I chose to take the pills over the daycare center tar treatments for six weeks. The pills began working in a matter of weeks.
How do you know you are psoSTRONG™? You know when the human spirit, with a lot of prayer, gets you through years of physical suffering and mental anguish—one long day at a time. You know if you can pass through the harshest, most painful desert, that you can get through anything. Living with a chronic disease can break you, but more importantly it can shape you into a stronger, more resilient person from the inside out.
I see a paradox at work in the dark times of life—in the weakest and most powerless moments. I once believed I could go it alone by my own strength. I didn't like to share about my skin for fear of rejection or drawing attention to it. I didn't like to ask others for help for fear that it made me look weak and helpless. But people who cared about me didn’t care if I had psoriasis. They wanted to come alongside me on that journey no matter how painful. I was the one shutting them out. Once I finally began sharing my experience and feelings with them I didn't feel so alone. Through their support I gained inner strength to face the daily battle.
Then I saw a second paradox at work: when I felt I couldn't even take care of myself, I reached out to join others in their pain. The year after visiting UCSF I decided to share my psoriasis story on the Internet. A health website I liked to visit invited bloggers to join their team. I thought about it for a couple months. Did I have time to write a blog? Did I have anything useful to say? I ultimately reached out to the blog editor. I told her I wanted to share my story in hopes of touching one other person living with psoriasis. Amazingly, I did find the time to write and others responded to my blog posts. They surprised me by their comments of encouragement and support. By giving something of myself, I received so much more back in return.
Even though I have lived with psoriasis most of my life, it wasn't until that time at UCSF when I finally felt I could face it without cowering. It took hitting near bottom before I could I understood the power of multiplying the resources you have at your disposal to fight what feels like an unending battle—by joining up with others and reaching out. That's what's made me psoSTRONG™.
It's true that nobody will ever know exactly what you go through. I remember my parents suffered along with me as a child with psoriasis. They drove me to the phototherapy clinic, and helped me put on my tar at night. But they didn't have psoriasis. Last year that all changed. My father received a positive psoriasis diagnosis in his early seventies. He recently wrote to my wife that now he has psoriasis, he knows how hard it has been for me. You never know until you've been there yourself. Others may not understand exactly what you're going through with psoriasis, but some of them might be willing to try.
There's also a whole community of people who have walked in those psoriasis shoes before you. Some are psoSTRONG™ they inspire others to keep walking forward even with painful joints, scaling skin, or anxious hearts. Others find friends who share stories and swap treatment ideas. We are a growing community, building awareness and advocating for a cure. We hope you will join us if you haven't already, for we are Pso much stronger together!
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.