In today’s digital age, there is an unending list of resources on health and diseases generally, and rheumatoid arthritis specifically. Upon receiving a diagnosis, it’s difficult to know where to begin. Lene Andersen’s new book, Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain, provides a thorough and easy to read treatise which addresses many aspects of living with RA. She attempts to get new patients to face reality while tempering that reality with hope. But this book is not just for the newly diagnosed. Veterans to RA will also gain insight, learn new ideas, and be reinvigorated to press forward in their fight with the RA beast.
When battling a chronic disease like RA, it is easy to become confused and discouraged. Through her book, Lene’s attention to detail and positive outlook is encouraging and full of hope. All topics are well researched and referenced. She provides links and connections to support groups. She deftly deals with touchy subjects like pain control, mood, choosing to take complex medications, side effects, and relationships. The writing style is easy to understand but she provides enough technical information to be helpful.
I could think of no one better to write such a book. Lene has faced a lifetime full of dealing with RA and this experience is infused throughout her writing. She is a well respected leader in the online RA community through her work at the HealthCentral.com RA site, the non-profit organization Show Us Your Hands, and her blog called The Seated View. Upon receiving a diagnosis in early 2009, Lene was one of the first people I met at Health Central and I was drawn to her calm, well reasoned, data driven, referenced, and clear responses within that online community. This book represents an extension of that same approach. I only wish that this book was available at the time of my diagnosis. I look forward to reading the next books in the series!
1. What initially was the driving force behind the genesis of writing a book about RA?
I meet so many people who’ve had their feet knocked out from under them because of RA and no wonder — it can be a difficult thing to live with. The Your Life with Rheumatologist Arthritis series is a mix of being an RA veteran and my background as a social worker. I’ve had RA (well, juvenile arthritis) since I was four years old, giving me over 40 years of experience in living with the disease and everything that comes with it. I wanted to use that experience to help empower others to take control of their life and make the most out of it. To help people be able to live well with RA.
2. In what areas do you see the biggest need for quality information for patients with RA?
There are so many… I’d love to see more work being done on the systemic impact of RA. If someone gave me a magic wand, though, I’d wave it and create magical funding for much more research on diet and alternative medicine done with scientific rigor. So many people experiment with diet and alternative treatments and we have very little reliable information on the role these can play in managing RA. I believe that both diet and alternative medicine can help at the very least manage symptoms and have used an integrated approach to my care since I was a child. We need reliable scientific evidence to indicate what works and what doesn’t.
3. How has the ever expanding digital world impacted the distribution of information regarding RA including your book?
The Internet and the digital world have had a huge impact on helping people with RA to become educated and empowered. The ready availability of information just a click away is shifting the locus of control from doctors to the person with the disease. This is a very good thing. Technology has also allowed me to publish my book independently, rather than have to persuade a traditional publisher that a book about living well with RA is a good idea. Being an indie author meant that very quickly after the book was finished, we made it available to anyone with an e-reader, smart phone, tablet or computer at a reasonable price.
4. What was the biggest AHA or inspiring moment during the process of writing?
Very early in the writing process, I put together that first paragraph in the foreword where I’m having an imaginary conversation with my RA. In that story, I turned the tables on RA, making it uncomfortable and twitchy while I firmly put it in its place, saying “you may share my life — I will accept that — but you may not control it!” It frames everything that Your Life with Rheumatoid Arthritis stands for.
5. What was the highest hurdle to clear during the process of writing?
The rewrite. I had somehow believed that once I had finished the book, revising it would be a snap. It wasn’t. Somewhere deep in the process, someone told me the general rule seems to be that it’ll take as long to rewrite a book as it took to write it. It made me feel better about how long it was taking. It also made me want to bang my head against a wall.
6. How did you prepare a large manuscript while dealing with physical disabilities that impact your ability to type?
One baby step at a time. Even though I use Dragon NaturallySpeaking (voice recognition software) to write, I still face a limit of how much I can do in a day. That time is shared between my work as Community Leader at HealthCentral.com’s RA site, my personal blog, working with Show Us Your Hands! and managing a chronic illness. It meant I usually dedicated weekends to the book and weekdays for the rest of my commitments. Looking at the book as a whole was too overwhelming, so I parsed it into smaller goals of writing one chapter at a time. Once I was done with one chapter, I moved onto the next without looking at how much I still had to do. There were times where I got derailed into sheer envy when I heard of able-bodied writers hammering out 3000 words a day, but I tried not to focus on that. Instead, I put my head down and took it one (metaphorical) step at a time.
7. What will be the topics for your next books?
For the foreseeable future, I’ll be focusing on writing the next two books in the Your Life with Rheumatoid Arthritis series. Book Two is about adjusting to the many physical changes brought about by an RA diagnosis and Book Three will be about the rest of your life, including working, traveling, family, sex, parenting, etc.
Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available from Amazon for the Kindle. If you do not have a Kindle you can download a free app for computer, tablet and smartphone here. It is also available for other ebook readers, including Kobo and Nook. A paperback version will be forthcoming in the Spring.