These electronic facilitations are important to Boynes-Shuck, but if lost would not be of critical concern. After all, she has been on the receiving end of healthcare for the last 17 years—well before the Internet age—after having been diagnosed with juvenile RA at age 10 years. No, what keeps Boynes-Shuck, now 27, really plugged in is the patient experience that can be shared online. This outlet is vital for someone who, at such a young age, became irreparably different from other children, and thereby isolated.
“I struggled with that very much. When I first got diagnosed there were not even many pediatric rheumatologists in Pittsburgh …,” she says. “I got bullied, people made fun of my walking with a limp. Even close friends didn’t really understand what I was going through because they could not relate to it … Arthritis? Isn’t that something that their grandma had?”
Years later, Boynes-Shuck is not only able to share these experiences with others now, but she can reach out to those who may be feeling that same way through her blogs, “Wellness with a Side of Life, Please” sponsored by the Arthritis Foundation for the mid-Atlantic region, as well as “Let’s Move Together,” which has a national readership. There are also two Facebook pages, “Arthritis Ashley” which is mostly of her personal experiences, and “Rheum to Grow” with a focus on teens and young adults with arthritis and related conditions.
Unfortunately, Boynes-Shuck continues to have plenty to write about, having been recently diagnosed with lupus overlap syndrome and celiac disease. “It’s been a great help, not so much diagnostically, but the support system that the web has provided has been vastly helpful,” she says. “I consider it part of my healthcare. I don’t think I would be as emotionally and mentally healthy as I am if I didn’t have that outlet.” After all, she points out, even grandparents are on Facebook now—why not use it to benefit your health?
Neil Canavan is a journalist based in New York.
