TOUCHED BY LYME:When young adults must deal with chronic illness
Author Laurie Edwards explores how to best cope with chronic illness in your Twenties and Thirties.
Life Disrupted: Getting Real About Chronic Illness in your Twenties and Thirties (Walker Publishing, 2008) does not mention Lyme disease. However, the book offers important insights and advice about being a young adult coping with a daunting physical illness. There’s a lot in there that I think any Lyme patient could identify with.
Author Laurie Edwards penned the book in her late 20s, after a lifetime of dealing with serious physical ailments that took doctors years to diagnose. (Sound familiar?) She spent much of her growing up years in hospitals and medical offices, undergoing diagnostic tests and assorted treatments–some of which were appropriate and useful, others not so much.
Eventually, she found she had a rare genetic respiratory disorder, celiac disease, and thyroid problems—all of which kept her in an ever-precarious state of health. With great effort, she made it through high school, college and into the working world.
By her mid-twenties, she reached what she called “maintenance mode.” She’d learned to manage her health problems well enough—but found herself ill-equipped to deal with the social aspects of life. Making friends, dating, wanting eventually to get married.
Trying to launch a social life raised hard questions: How soon do you tell others about your health problems? At what level of detail? And the biggest conundrum of all for Edwards: “Why would anybody choose me to love when there are so many healthy people out there?”
As Edwards told me in a recent phone conversation, “It took me a while to get that chronic illness isn’t the defining characteristic of my life….that friends could see me as more than just a collection of symptoms.”
Ultimately, she came to recognize that being candid about illness can expose the truth of your relationship. She admits it might scare some people off, but not everybody. (The book includes a humorous account of the New Year’s Eve party where she met her now-husband. Recently out of the hospital and over-imbibed with champagne, she blurted out her health history because she didn’t want him to think the IV-caused bruises on her arms were track marks.)
As she writes in the book, “Because the truth was out there so early, a truth that would make some people hesitant, we didn’t have to waste time keeping up pretenses or darting around important discussions.”
I asked her for any parting words of wisdom for young adults dealing with chronic illness. “I had a hard time with the concept of acceptance, ” she said. “I had to learn that acceptance is not a sign of weakness, but a position of power and maturity. I think it’s important to accept where you are, focus on where you are, and find a way to move forward.” Her book explores different ways of doing that.
Laurie Edwards also blogs about chronic illness here.
You can contact blogger Dorothy Kupche Leland at firstname.lastname@example.org.