Interview With Author Lene Andersen*

I recently read “Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain” by Lene Andersen.

I’ve invited Lene here today to tell you a little bit about herself and her book. 

First off, can you tell my readers a little bit about yourself?

LA: I was born and raised in Denmark and moved to Toronto, Canada in the early 1980s. I have a Masters degree in Social Work and used to work in policy and program development in the human rights field. After a huge flare of my RA in 2004, I started the Biologics — first, Enbrel, now Humira — and for the first time in my life, a medication worked for me. Given a second chance at life, I decided to pursue my lifelong dream of being a writer. These days, I'm writing the Your Life with Rheumatoid Arthritis series, as well as being the Community Leader for HealthCentral.com’s RA site and the Director of Community Outreach for Show Us Your Hands!

You were diagnosed as a child with Juvenile Rheumatoid Arthritis.  How have things changed in the RA world since you were diagnosed?

LA: It’s like night and day. When I was growing up, the only treatments available were prednisone and gold injections, and prednisone wasn’t used very much for growing children. This meant that most kids with JRA — or Juvenile Idiopathic Arthritis as it’s known now — got progressively worse over time. It’s why I’ve been a wheelchair user since the age of 16. What I see in children (and adults) now is something I never thought I’d see in my lifetime. Remission. Low disease activity. Participating in sports. Living largely normal lives. From my point of view, it’s a miracle.

What made you want to write a book about RA? 

LA: I wanted my 40+ years of experience living with this disease to be useful in some way. I’ve met so many people who’ve had a hard time finding their way through the crap of RA to a place where they can focus on their life and living it well. You can get there on your own, but it takes years. I wanted to create a shortcut.

While the book does talk about your own experiences, it focuses more on providing information to those with RA.  How did you decide on a format that was more advice than memoir?

LA: A memoir is just my story. It’s something I’ve thought of writing in the future, but right now, I wanted to do something more practical and immediately useful. Your Life with Rheumatoid Arthritis is a guidebook that people can use to start on their own journey to empowerment. 

You talk about the “treat-to-target” approach for treating RA.  For those who are unfamiliar, how is that different from the “traditional” approach to treating RA, and why is it useful?

LA: The traditional approach to treating RA is to “go low and go slow,” gradually working up the ladder of medications from milder (such as Plaquenil) to eventually stronger (such as Biologics), if nothing else works. While you do that, the disease can continue to rage, creating damage. The treat-to-target approach has been made possible by the advances in treatment with drugs like methotrexate and the Biologics. It applies the model used when treating, for example, diabetes or high blood pressure, where medications are constantly adjusted until the right numbers (blood sugar or blood pressure) are achieved. Treat-to-target assesses  progress every three months, changing medication or dosage until remission or low disease activity has been achieved. This model of treatment makes it more likely that low disease activity or remission will be reached before significant damage has occurred. This leads to an increased chance at being able to live a fairly normal life.

It seems that RA treatment, at least for you, has been a combination of traditional medicine and alternative therapies.  How essential do you think this is for others with RA?

LA: Conventional medicine is the only tool we currently have to control the disease, but in my experience, alternative treatments can make a huge contribution to improving your quality of life. There are many different types of treatments that fall into the “alternative” model and people can try different ones, depending on their comfort level. Massage, acupuncture, naturopathy and so on, are all considered alternative treatments.

You talk a lot about pain management in the book, and it seems like a rather necessary component of treating RA, although it can be a sensitive subject.  Other than Prednisone, my own treatment hasn’t really focused on pain management (even though a significant amount of pain accompanies my disease).  What do you feel is the best way for people to approach their doctors about this issue? 

LA: First, I think it’s important that we realize no one’s going to give us a medal for sucking up pain. There is a myth in our culture that you have to have a stiff upper lip, but it’s a completely unreasonable approach to dealing with chronic pain. Talk to your doctor about the impact the pain is having on your ability to live your life. Be honest, cry if necessary. Your doctor’s office is not the place to pretend to be doing better than you are. Many rheumatologists say they don’t treat pain, they treat inflammation and there is an increased understanding that pain is a disease onto itself. If your rheumatologist is not comfortable treating your pain, ask for a referral to a pain specialist, especially someone who uses a multidisciplinary approach to treating pain. If there is no pain specialist in your area, approach your GP — many people with RA rely on their family doctor for prescriptions related to pain management. As well, pain management is about a lot more than medication. Talk to other people with RA about tips and tricks to reduce your pain.

Let’s talk about napping, or what you refer to as Mandatory Rest Periods.  Due to the fact that I have both lupus and RA, I have discovered that napping is essential for my ability to function.  However, even after nearly five years of living with these illnesses, napping is something that I feel guilty about having to do and actively resist.  What do you say to those of us with RA who are so stubborn we would rather avoid napping than deal with the outside world’s reaction to our having to do it?

LA: Autoimmune diseases like RA and lupus come with a higher level of fatigue — it’s a scientific fact. This is one of those moments where I’m going to be very blunt. I’d say that you have internalized a healthy person’s judgment that napping is indulgent and lazy. You have to ask yourself if it’s reasonable to apply the standards of a healthy, able-bodied person to someone who has a chronic illness (or in your case, two). Also, keep in mind that guilt is a sign that you’ve done something wrong. Ask yourself if that’s an appropriate feeling about getting the rest you need. Start thinking about the benefits of napping. In my experience, taking a rest every day enables me to do more in the long run. I work during the day, take a rest in late afternoon and after dinner, I go back to work, feeling rested and having more energy. I also found that calling my naps a Mandatory Rest Period helped the rest of the world to gradually understand that my rest was a necessity, not an indulgence. As an extra benefit, it also helped me understand the difference!

If you could give one piece of advice for those who are new to RA, what would it be? 

LA: Talk to others who live with RA. It’s a scary time and it’s easy to believe that your life is over. It isn’t. RA means you have to live somewhat differently, but your life will still be there. Talking to others, especially those who approach the situation from a place of positivity, will help you more than you can imagine.

If you could give one piece of advice to those who are veterans to RA, what would it be?

LA: To never stop reading and learning about your disease. It’s easy to get stuck in just muddling through or doing the same thing that you’ve been doing for years that’s only sort of working. New research happens all the time, new knowledge comes out all the time. Staying informed helps keep you ahead of your disease and ultimately have a higher quality of life.

What have you learned from your experiences?

                                            

LA: I’m fond of saying that RA gives, as well as takes. People usually look at me as if I’ve grown another head when I say that. But it’s true. RA gives you resilience, it makes you stronger. If you can live with RA, you can do anything!

What do you hope readers will get from your book?

LA: I hope that my book will help readers feel more empowered and develop a sense of control over the life. I hope it will help them believe that they can live well with RA. 

In the book, you mention that this is the first in what you hope to be a three part series of books about living with RA.  What will the other books focus on, and when do you anticipate they will be available?

LA: Book 2 will be about adapting and adjusting to life with RA, including how to navigate the healthcare system and adjusting emotionally to living with a chronic illness. Book 3 will be about the rest of your life — work, parenting, social life, sex, and so on. As for when they’ll be available, that depends a lot on how my RA behaves! I’m involved in a number of things, including my job Community Leader for HealthCentral.com’s RA site and Show Us Your Hands! and only have so much energy in a day. I hope to release Book 2 sometime in 2014, but will also be releasing some shorter pieces here and there before that.

Right now the book is available for e-readers.  Even though I have one, I am still a lover of the actual book.  Any plans for a hardcopy version of the book?

LA: You’ll be happy know that a paperback edition is scheduled to be released in May (depending on my RA behaving).

Aside from working on your other books, what’s next for you?

LA: I’m not sure I have enough time or energy left over to do anything other than write. ;)

Thanks, Lene, for taking the time to visit Getting Closer to Myself today. 

You can find more information about the book at the website and blog Your Life with RA.

You can find out more about Lene at her personal blog, The Seated View.  She is also the Community Leader for HealthCentral.com's RA site.

*I received a free copy of this book from the author.  However, my choice to have Lene as a guest blogger was my choice, and had to do with my personal opinion of the book.