September 27, 2010

Living With Lyme

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Two-thousand and nine wasn’t a particularly productive year for me. I was accepted into Cornell’s graduate program in public affairs which was nice. For a moment. And then life went back to being normal. The new normal, that is.Earlier that year, after what seemed like a seasonal bout with the flu, I contracted Lyme disease. Only I didn’t know it at the time. I just knew something was terribly wrong and that my body didn’t feel right.I felt tired when I woke up. And not just tired — exhausted. I had constant aches, shooting pains and a rash appeared on both my arms. Fevers and chills, headaches and malaise, a stiff neck, strained breathing, sensitivity to light and sound: They were all part of it too. The whole world looked and sounded different to me, and I didn’t know why. I didn’t know what was going on.But now that I do know, the world still seems different — even though it’s only me who has changed. After over a year of struggling to find the origin of my affliction, and after bouncing around from physician to physician, only to hear the new guy arrive at the same false conclusion as the guy who came before him, I dried up. Any energy I had left after this whole Lyme thing began was spent on finding a doctor who would listen. I knew what I had, I just needed to meet a doctor who knew enough about Lyme to confirm it.These days, I’m just kind of … here. This is how people with chronic Lyme disease live. We’re here experiencing life just like everybody else, but the ambitions we had are forced to lie dormant as we work to control our illness. There are no good days with Lyme, just occasional moments of joy one tries to hold onto. I cling tight to those moments, as I fight to continue my journey to revive the man I was before.I share this story, not to wallow in self-pity, but in an earnest effort to illuminate a hidden reality on this campus and beyond. People living with Lyme look normal to the naked eye. If they don’t tell you they have it, you may never know that there is anything wrong. But people with Lyme are living lives where every step is a challenge. A simple walk to answer the door can be a punishing chore.Lyme disease, while being the most common tick-borne disease in the United States, is largely a mystery — to mainstream doctors and everyday citizens alike. Even if one suspects he has contracted it, the laborious task of finding a “Lyme-literate doctor” can be too grueling an errand for some. It certainly was for me. Indeed, without my mom’s meticulous examination of my medical records and persistent efforts to find a knowledgeable physician, I probably would never have known that the constant pain I endure is the direct result of Lyme.Contrary to popular thought, Lyme disease is not restricted to the town of Lyme, Conn., nor to the six states of New England. It’s not just a Northeastern or an East Coast thing. It’s an all-states thing. It’s a North American thing. I caught it somewhere in Utah, but it is, admittedly, even more prevalent around here. In fact, according to statistics from the Centers for Disease Control and Prevention, New York State is the nation’s leader in new reported cases of Lyme.But the problem is that so many cases go unreported. This is due to one of two factors:1) The clinical diagnoses of Lyme, which are common since there is no definitive test for the disease, fail to meet the CDC’s standard to be officially recognized in its annual list of reported cases. 2) Many people living with Lyme don’t even know they have it. They either try to brush off their symptoms and do their best to adjust to their newer, crappier selves, or more likely, they attempt to find out what’s ailing them and fail to receive a proper diagnosis. American health insurance companies have contributed to this dilemma, but the mainsprings of poor physician familiarity with Lyme disease are so great that I recommend renting the award-winning documentary film Under Our Skin for the full story.But back to my story. I am just trying to live my life the way I used to live it. I try hard to be the same person I was before, even with the pain I carry with me. And I continue to remain hopeful that one day I’ll finally feel better. But until that day, I will do my best to educate friends about Lyme disease so that my story — the long, hard journey of every patient with Lyme — does not become theirs.

For more information, please visit the International Lyme and Associated Diseases Society Web site at www.ILADS.org.Will Elwood is a graduate student in the Cornell Institute for Public Affairs. He may be reached at wre8@cornell.edu. Guest Room appears periodically this semester.

Original Author: Will Elwood