Why Having Psoriasis Motivates Me to Give Back
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Living with psoriasis isn't like having another job — it is another job. I start in the morning with moisturizers and topical medications. Around noon, I take my pills. In the evening, I shower and, once again, apply layers of lotions and ointments. At bedtime, I take my second set of pills. Twice a week, in the evenings, I inject a biologic. Add doctor's visits, exercising to ward off psoriasis comorbidities, staying on top of refilling prescriptions, volunteering for the National Psoriasis Foundation (NPF), and writing a health blog, and I feel like I'm moonlighting on my day job.
If you’ve ever worked the “psoriasis job,” you know how tiring and old it all gets — and fast.
This past weekend, my wife, Lori, and I attended our first NPF National Volunteer Conference in San Francisco, about a two-hour-long drive from my home. I couldn’t miss the opportunity to join great workshops, hear inspirational speakers, and meet others living with psoriatic disease. The conference did not disappoint.
As we drove home, Lori and I excitedly talked about all the great people we met, and the new information we learned. All the volunteers who not only keep up their own treatments and lives, but also tirelessly give their time and energy for the cause of psoriasis, inspired me. I wondered, “What keeps them going? What’s their motivation?”
I thought of those questions because I’ve been asked the very same questions recently. One interviewer asked what keeps me fighting for my treatments, particularly the time my insurance denied my biologic treatment (injection) dosage. At first, I answered the obvious: I keep up my treatments and routines to improve my psoriasis. I've experienced times when I didn’t keep up treatments or speak up when I needed to. Of course my condition worsened for lack of action on my part. Certainly, wanting to avoid both 90% psoriasis skin coverage and depression are great motivators. But I told her I've come to realize the deeper motivation for doing all I do for my psoriasis: When I take care of my health, I can be a bigger part of others’ lives.
I cherish each opportunity I have to share in the lives of those around me: for example, my three children each live with challenging, ongoing health conditions. I take them to doctor's appointments and check up on them regularly. I oversee a diverse group of over 150 people at church, providing leadership, teaching, and counseling. I am a son of aging parents, one of whom was recently diagnosed with psoriasis. I engage the psoriasis community with this blog and social media accounts. Lori partners with me in all these and more. I can’t actively and effectively be a part of their lives if my psoriasis is out of control. I missed out on so much of their lives 10 years ago when I allowed psoriasis to overwhelm me. I don't want to miss out again.
At an appointment last week, a healthcare provider asked Lori and me how we help the other when we each bear the burden of personal health challenges. We’ve learned over the past 21 years of marriage that when we help each other, the load is lighter — not heavier — for both of us. Two can lift a larger, heavier weight than two individuals separately. Sharing that load together motivates us. Others also motivate me to keep going by encouraging me and picking me up when I’m in a rut. A number of people I met at the conference personally encouraged me to keep writing. They probably don’t know how much that means to me.
What motivates you to not just survive, but thrive living with psoriasis? Is it the hope to feel better so you can accomplish something significant, like a job, project, or hobby? Is it a person who inspires you to be the best you can be, such as a family member, friend, or someone who depends on your mutual care? Is it a community that you can more actively participate in: the psoriasis community, your faith community, or your neighborhood?
Whatever motivates you, don't let it out of your sight. Keeping up with psoriasis is not an easy job, but it’s worth it when you see all you have to live for.
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