Dear Inspire Community Members,
We at Inspire are pleased to bring you the second in a series of Q&A interviews with people who are making contributions to help patients worldwide. We are posting these interviews in a Q&A format in my Journal as a news feature for Inspire community members.
I spoke recently to Kelly Young, a patient advocate who blogs at Rheumatoid Arthritis Warrior. Young has battled chronic autoimmune illness most of her life, and was diagnosed with RA in 2006. Young, on her site, has written in detail about the onset of RA. (Click here to read that story.)
Young was the first patient and blogger to attend the American College of Rheumatology Scientific Meeting as a member of the press. In addition to her daily blogs on Rheumatoid Arthritis Warrior, Young writes periodically for other websites, including Orthopedic Posterous, WEGO Health, and Health Care Professionals Live. She is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan.
Inspire: What made you want to start a blog and your other advocacy and information efforts you do through social media?
Young: When you look at the tagline for the blog, it’s, “Bringing encouragement and information to fight RA.” For the encouragement part, I’ll say that when I got this diagnosis, it pulled the rug out from under me and changed my whole life, and I didn’t know anyone else with this diagnosis. In the next couple of years I met a few people with the same diagnosis and I realized how valuable it was to know someone going through the same challenges. I started finding connections anywhere I could. I decided to have a mission of helping people find a friend with RA, so that’s where the social media part comes in. And the encouragement comes from just knowing someone else, who can say, “I hear you,” and they understand what you’re experiencing because they’ve walked that road.
Inspire: And the information component of your blog?
Young: The information part is actually just as big a component. I myself was looking for information when I was diagnosed, and pretty much all of the patients that I’ve met are looking for information. Trying to find information about RA that is accurate is hard. I would go from place to place and not see my experience reflected in the information, and that was very aggravating. So, I became determined to make accurate information more accessible for RA patients. I’m still working on it, and I feel like I’ve barely made a dent. But there’s a lot of information my site—I’ve made about 450 pages. It’s information from the patient’s viewpoint, with humor and in a matter-of-fact tone of voice. I’m not claiming to be anything I’m not. I don’t have a medical degree. I’m trying to be a reporter for the patient.
Inspire: You wrote a blog post called 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients and they were short, pithy opinions, like, “There are a disproportionate number of nurses and hairdressers with RA,” and, “Many of us have had a doctor doubt our veracity.” What made you write that one?
Young: I was really tired, and I just stood back and made a list of what I’ve noticed, and I’ve found so many times that that is where my readers are too. It never fails that those lists are very popular. I try to be cautious and not be identifying posts as scientific studies, but I get an enormous amount of data from feedback on the comments section on the blog, and private email messages and responses on Facebook. So when I say, “It doesn’t seem like the swelling correlates with the pain,” I could write a book to back that up.
Inspire: Your comment speaks to the tremendous resource of patient first-hand comments and observations.
Young: This is a disease that is very misunderstood by the medical community. When I talk with really good doctors and really smart scientists, that’s what they say—they know that. But out there in the field, the medical community acts like they do understand RA, and we patients don’t, and we’re wrong. So, there is a major disconnect between what is written and told about this disease, and what people live with it say about it.
Inspire: What blog posting in recent times got a particularly large response from readers and why do you think it got the reaction it did?
Young: It probably was the post I called, Having a Cuppa Together: a Rheumatoid Arthritis Meme. It was the very first time we’ve done a meme. I just said that I was going to answer these little questions (sample questions include, “Who helps you open doors or jars when you need it?” and “What do you wish people knew about Rheumatoid Arthritis?”), and readers can answer the questions too, and we had more than 200 replies on site, plus more that were posted as a note on Facebook or on other bloggers’ sites, so we ended up with hundreds of them, and that was kind of a surprise. And any time I take a symptom, whether it’s stiffness, or swelling, or any kind of RA symptom that there’s misunderstanding about, then there’s a huge response to it too.
I think the public service announcement posts I’ve done about RA awareness, the memes about awareness, are all saying, “This is what we have and this is what we’re experiencing, and we wish that society and the medical community understood.”
(Learn more about Young by following her on Twitter or YouTube or connecting with her on LinkedIn. She created and moderates the weekly Twitter chat on rheumatology topics, which can be followed with the hashtag #rheum. Please email me at firstname.lastname@example.org if you have suggestions for future Inspire Q&As. Feel free to post comments to this interview, and thanks for reading.)