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What I Remember When I See Lyme Disease Mentioned in the News

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I would have never guessed the rush of adrenaline I would experience scrolling down my Twitter or Facebook feed and landing on a post about Lyme disease. Or the joy at the realization that there are many others like me out there. With so much in the news about Lyme disease these days, I find myself starting to remember certain things that I thought I had pushed back, way back into the deepest parts of my mind.

I have always been a simple person, seeking a pretty simple life. I never thought my extraordinary health symptoms would lead me down a rabbit hole of epic proportions. My journey started the summer of 2001 and until that point, I was completely healthy. After that point, strange and inexplicable things started happening which over 30 doctors could not figure out. Like Yolanda Hadid, Thalia, Avril Lavigne and most recently Bella Hadid, I knew something was very wrong. However, every single doctor and specialist, even the Mayo Clinic, said I was just fine.

Fast forward to the summer of 2006 when I go to see one of the best Lyme-literate doctors on the East Coast. On that day, he would present me with the diagnosis I knew I had all along. I had Lyme disease and I felt I had hit the jackpot because a clinical diagnosis would be made, despite my negative blood test. (According to the International Lyme and Associated Diseases Society (ILADS), the tests are not always reliable to make a definitive diagnosis of Lyme.) And now it’s all coming back to me — I was in his office thinking how wonderful this was to finally have the problem figured out. If I now knew the problem, I could fix it! Little did I know, this was just the beginning of a long road.

You have to get worse before you get better… I remember feeling like surely I was dying three days after starting treatment. Just like remembering my exact location when the Twin Towers fell, I remember my exact position on the bed when he returned my call to say to me, “You are going to feel like you are dying, but trust me you will not.” So, the road ahead was long… I’ve had good years and bad years. Like many Lyme patients, they find something that works, until it doesn’t. 

The biggest hurdle besides the physical aliments is the toll it takes on you mentally. Also the toll with family and friends and relationships. Recently my daughter asked, “Mom, why can’t you just take something to not feel like that?” How do you explain the complex road of the Lymie to a child? How do you say you are sorry for all of the hours, days, weeks, and months you couldn’t participate in certain things or go on certain trips? The small daily disappointments turn into larger ones, i.e. missing your child’s parents weekend at college.

And so I have lost some really important time in this long journey, but I have gained far more. I have found a new passion in life in trying to spread awareness about this illness. More importantly, in finding just a few cherished people that do know your journey and how hard you are trying every day to make things manageable… it gives you hope. A seasoned Lymie knows how to appreciate the small, special, quiet gifts that are given to them. Sometimes in the most unbelievable and hardest times, we find the greatest gift in our relationships and the strength that was given to us to withstand this disease. And so whatever battle you might be fighting, I hope to remind you of that small gift that was given to you, too!

Originally published: October 5, 2016
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