By Krista Kellogg
One of the most difficult things about living with a chronic disease like psoriasis or psoriatic arthritis is learning how to integrate it into your life. It doesn’t go on vacation when you want to go to the pool with your kids or on a job interview or a date. It’s always there, waiting to sabotage the best plans.
When you’re living with a chronic disease, life requires extra effort and accommodation on all fronts, from getting a haircut to the logistics of your sex life. It’s a 24-7 consideration, and unless you embrace it as part of your journey and help those around you understand what it’s all about, it’s easy to miss out on your own life. Not until you can advocate for yourself and educate your manicurist, your co-workers, your partner and your elected officials about the impact of your chronic disease, can you truly feel like you are living like a first- class citizen.
Being an advocate doesn’t mean you have to pitch a tent in the park or join a drum circle (not that there’s anything wrong with that). It’s about telling your story in an impactful and meaningful way, making it part of your vernacular instead of suffering in silence. When I first began talking about the impact of psoriasis on my life, I cried all the time. I had pushed the pain down so deep that when I allowed myself to open the flood gates, years of shame and embarrassment flowed out.
Accounts of my most private mortifications in dealing with psoriasis became a new language that I could use to advocate for myself and others. Sometimes they were logistical, like the time I threw away my satin bridesmaid sandals in the dumpster behind Aldie Mansion before the reception at my step-brother’s wedding because they were so caked with blood from my cracked feet. Sometimes they were discriminatory, like the third and final time my manicure appointment was “canceled” because they didn’t want to service anyone that was “contagious.” And sometimes, they were personal, like all the times I wondered if my husband saw me as the monster I thought I was… a cracked, swollen, oozing monster with a limp and a sandpaper touch. They were always compelling, though. Years later, they still are.
Our stories validate our requests for better and safer treatments, more research, and a cure. They help our representatives in Congress justify requests for increased funding and access to fair and affordable insurance coverage. If we don’t tell our stories, who will?
Anyone can be an advocate. It’s simple. You can write a blog, send a letter to the editor or use social media to advocate for your disease. You can email or tweet your member of Congress about a bill or an issue and become a “fan” of his or her Facebook page. Just start by telling your story. Join me in advocating for psoriasis and psoriatic arthritis.
Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis. She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.