The Inspire Q&A: Inspire talks with “Arthritis Ashley”

Dear members,

We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. We post these interviews in a question-and-answer format in my Inspire Journal as a news feature for Inspire group members across our many various support communities.

Ashley Boynes-Shuck, also known as “Arthritis Ashley,” is a writer and public speaker best known for her inspirational self-help and health advocacy work in the chronic illness and arthritis communities. Boynes-Shuck herself has multiple chronic illnesses, including polyarticular rheumatoid arthritis, osteoarthritis, celiac disease, Chiari malformation drug-induced lupus, and other various autoimmune and chronic pain issues. She is a blogger for the Arthritis Foundation.

Among her accolades are being named one of Pittsburgh's Top 40 Under 40 for 2011, receiving a nomination for the 2012 Leukemia & Lymphoma Society's Woman of the Year, and a nomination for an ATHENA Award in 2012, winning Best Blogger in Pittsburgh, Who to Follow on Twitter 2010, Organized Wisdom Arthritis Expert, and Top 100 Arthritis Blogs on the Web. Dr. Oz’s website, “Sharecare” also named her a Top 10 Online RA Expert in 2012.

Inspire: What led you embracing the persona of “Arthritis Ashley?”

Boynes-Shuck: Before the persona was me with arthritis, and unfortunately, when you have a serious illness, it does become part of your identity whether you want it to or not. I figured if people were going to identify me with this illness, then I might as well turn that negative stigma into something a little bit more positive, and try to help people. I’d rather the attitude be, “Hey, that’s Ashley. She has arthritis and all these other health problems, but she’s reaching out and helping other people, and not letting it define her.”

So, I created “Arthritis Ashley” and a page on Facebook called Rheum to Grow, for teens and kids and young adults with juvenile arthritis, and at the time it was just to advocate and spread awareness, and I found that while I was helping other people, it was also helping me cope with my health problems.

Inspire: What did you learn from people you began to interact with people in social networks as you blogged and managed the Facebook page?

Boynes-Shuck: I think that with anything, health-related or not, you’d rather talk to a real person rather than “the company” or “the organization.” The peer-to-peer networks seem more like a friendship, and more natural. There needs to be a balance. People need to be informed online with content that is professional, that is based in science, that has credibility, but people also need the emotional support of a peer-to-peer type situation as well. When you live with these illnesses, the only way I’ve dealt with it is to educate myself on the condition and the treatment options, but also to have an online support system with friends who know what I’m going through. Without being educated and having the emotional support, you can’t be at the very best place you can be in coping with your condition. You need both sides of it.

Inspire: Since you have many chronic illness, you deal with managing multiple specialists. What advice do you have for patients and caregivers trying to navigate that situation?

Boynes-Shuck: Speaking from just my own experience, I would advise patients with multiple specialists to really figure out if they need all of these specialists. I was seeing over six different doctors: a rheumatologist, my primary care doctor, a gastroenterologist, an allergist, an endocrinologist, a neurologist, a neurosurgeon, an orthopedic surgeon, and a physical therapist. I mean, it went on and on and on and on. My entire life was literally going to a doctor’s appointment at least two to three times a week, and it’s no way to live, like you are a professional patient. A lot of these doctors are only treating what you’re going in there for, so it gets very confusing. They all try to be on the same page with medications prescribed, but it can get very messy when you’re seeing that many different specialists who are dealing with that many isolated parts of your condition. I ended up on a lot of medications that I did not need. Ultimately I narrowed down my doctors and my medications and so I’d advise people to do the same and really consider what they need.

Inspire: You write about what it's like to live a “spoonie” life, to describe people living with chronic invisible illnesses. One of the constant challenges, particularly for a younger person like yourself, is not participating in activities because of how you feel. How do you manage that daily challenge?

Boynes-Shuck: I saw someone on a talk show say that sometimes saying “no” is the healthiest and most loving thing you could do for yourself. And that really hit home for me. And on the flip side, I also think it’s important to say “yes.” I think too many people who have these kinds of conditions also don’t say “yes” enough to living their lives more fully. It’s hard, but you don’t want to become a hermit, and you do need to have a social life as best as possible. It’s all about balance. If you’re having a good day, don’t be afraid. I know of people who will say, “Oh, I’m having a good day but I don’t want to overdo it and make myself sick,” even if they’re feeling well at that moment.

Inspire: What do you think are the highest best uses of healthcare social media?

Boynes-Shuck: First, I think it’s the engagement with others who are dealing with the disease or condition you are dealing with.

Inspire: To that point, in your opinion how valued is that component by doctors and the medical community at large? I sense that for some it’s seen as a “nice to have,” but not critical to the patient’s health.

Boynes-Shuck: I think it’s underappreciated right now by the medical community, but I see more doctors are starting to see the value in it, because it’s such an important part of the healing process. I was in such a worse place emotionally before I started doing all of this stuff online. Social media provided such an outlet for me, and it helped me cope so much, and it helped me turn my life around as far as my attitude, my confidence level. I think so much more positively now, and am doing so much more, and I credit social media for some of that. Social media has given me a lot of opportunities, and has been rewarding in many ways. I don’t think enough doctors see the full value of it, and that thinking needs to change.

Inspire: So how can that change?

Boynes-Shuck: One way is that physicians can learn more and gain more insights into patient populations as a whole, through social media, is to follow Twitter chats and Facebook dialogue regarding the conditions that they treat, to befriend patients – maybe not their own, but patients in general – to be able to, for lack of a better phrase, “listen in” on what the feelings and general needs of the patient community may be. They need to learn more about the intangible parts of diseases and look at patients as people rather than just lab results and treatments.

(Learn more about Boynes-Shuck through her Website and her Twitter account. Please email me at john@inspire.com if you have suggestions for future Inspire Q&As. Feel free to post comments to this interview, and thanks for reading.)