A New Year’s Resolution: Listen
As we look forward to 2017, we make many resolutions to start the year off right include losing weight, getting organized and spending more time with family. But as a person who struggles with psoriatic arthritis, I’m encouraging you to add another: Listen.
Listen to your body
Listening to your body might be one of the best things you can do to help manage your disease. For instance, does stress make your psoriasis worse? Does alcohol trigger a migraine? Does fatty foods cause heartburn? Does cold weather affect your arthritis?
Don’t stop there; share your findings. There may be commonalities among others with the same illnesses. The National Psoriasis Foundation's Citizen Pscientist is a great way for psoriasis and psoriatic arthritis patients to see how individual findings stack up with others from around the world. A global picture can shed light on the disease and lead to better ways to managing psoriasis.
Listen to your inner voice
Listen to that voice inside your head that says something’s not quite right. No one knows your body like you. And for parents, no one knows your child like you.
My child also has psoriatic arthritis. We spent much of the fourth grade bouncing around from specialists to emergency rooms to diagnose and treat acute pain in his chest. Test after test revealed no concrete answers. Doctors offered diagnoses ranging from stress to growing pains, none of which satisfied my mother’s intuition. Finally, after many other causes were ruled out, my son’s pediatric rheumatologist determined that his arthritis caused inflammation in his rib cage. Increasing his medications relieved the pain. We later received a diagnosis of restrictive lung disease, which also served to explain why he doesn’t get the proper amount of air into his lungs.
Listen to others
Lend an ear to others who are struggling with the same illness as you. Listen to their challenges and offer possible solutions. Find reputable forums and reach out to others. Whether it’s sharing your experiences and letting users know they are not alone or whether you’re just there for someone to vent disease frustrations, you can make a big difference in someone else’s life.
Make your elected officials listen to you
Important research must be funded to find cures, better medicine and improved ways to manage chronic diseases like psoriasis and psoriatic arthritis. Your voice matters. Not only are you advocating for yourself, you are representing a much bigger community across the nation.
In 2011, our family participated in Capitol Hill Day. Volunteers from the National Psoriasis Foundation (NPF) met with the staff of U.S. representatives and senators to bring awareness to psoriatic disease and urge funding for research. One of our visits resulted in co-sponsorship of a new legislation that would advance federal commitment to understanding psoriatic disease. We continued our efforts at home by visiting our elected officials’ staff in their Michigan offices. We also wrote letters and become e-advocates.
In 2013, I, along with other volunteers and researchers, went back to Capitol Hill for another round of important advocacy on behalf of NPF. Once again, I was honored to share my story and push for research funding.
You can do the same. Visit or write to your elected officials, especially those coming to Congress for the first time this January. Encourage them to fund national research. Often research for one disease, like psoriasis and psoriatic arthritis, can benefit other areas of medicine.
Do you have other ways to listen and make a difference in the lives of those with psoriatic disease? Share them in the comments below.
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