Get comfy: The 2016 edition of Experts by Experience is hot off the press, and you’ll want to dive right in to this collection of patient stories. The compilation is made possible by a partnership between Scope and Inspire, a company that builds patient communities.
You’ll read about the experiences of a kidney cancer survivor, a patient who suffers from chronic pain and a man who struggled with his psychiatric medications, among others. You’ll find tips on patient advocacy, advice on building relationships and techniques on communicating with doctors.
The language is down-to-earth, honest, brave. The stories are moving and inspirational. Take Sara Wyen’s piece on recovering from a blood clot:
The coming weeks and months of my recovery were the most difficult I’ve ever faced in my life. I could no longer do the things I loved to do, like run, or the things I had to do, like work, and I needed to use an oxygen tank and wheelchair. My strength was depleted, my leg and lungs hurt, and I was grappling with a diagnosis of a lifelong disorder that requires continuous care and medication. I was consumed with unwavering anxiety and depression.
The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life.
Or, Paula Dixon on the challenges of telling others about her disease:
Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show… My joints hyperextend, which is great for sex but terrible for JV soccer… I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.
There are more and all are worth reading. As C. Jimmy Lin, MD, PhD, writes in the introduction, “Stories shared through communities of individuals can provide insights into care, journeys and hope for the future. It may not be considered cutting edge, like genomics sequencing, but it is good medicine, and essential.”
Previously: A year’s summary of patient insights from Inspire contributors, A look at how social media helps connect patients with rare diseases and Learning from patients by walking in their shoes
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