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Wednesday, Aug 19th 2009
My Mother Had a Chronic, Debilitating Disease
Deborah Norville, Emmy award-winning journalist and host of Inside Edition
Rheumatoid arthritis (RA) is something very personal for me. My mom had RA. She was diagnosed when I was ten and the larger part of my childhood was colored by the stark reality that my mother had a chronic, debilitating disease. In just a few short years, she went from being the energetic, outgoing mother of four who helped run the family business and chaired the local Girl Scout cookie sale, to being bedridden because of joint damage.
My mom was diagnosed with RA in the 1970s and back then, not much was understood about rheumatoid arthritis. We knew it wasn't the 'other' kind of arthritis, osteoarthritis, but beyond that it was pretty much an information void. The doctors offered up very little about the disease, except to say the treatment options were limited. Even worse, these were the days before the Internet so there was nowhere to turn for mom or our family to do our own research, to learn more about the disease, to learn what kinds of questions we should have asked her doctors. There were few effective treatments when my mother was diagnosed, but if she had known some of the encouraging news about exercise and motion and how to move when you have a flare-up, if she'd heard some straight talk about how to negotiate relationships when RA is part of the equation, if she'd heard about the connection between nutrition and inflammation -- well! I can only imagine how encouraging that might have been. My mom battled RA for ten years before she passed away from complications.
People forget that the physical symptoms are only one aspect of RA. With chronic diseases, there is so much more to manage than just the aches and pains.
I suspect there is a person out there who's just recently learned they have RA and they are busy planning how they are going to 'stop' living. I imagine there is a family member who is thinking, "Hey, this isn't what I signed up for" and filled with misgivings about the future.
I have sometimes wondered if things might have been different if we could have been better informed and were able to be better advocates for my mom. That's why I'm so excited to be a part of New Way RA, a new online talk show focused exclusively on topics relevant to anyone dealing with rheumatoid arthritis. The show takes a whole life approach to RA and features interviews with experts on not just the medical issues of RA, but other topics relevant to the overall well-being of someone living with a chronic condition - nutrition, fitness, relationships and work/career management.