Katie Couric’s talk show, “Katie,” seeks people with Lyme disease to tell their stories on a future episode.
A few years ago, I was sitting with a therapist, discussing what it is like to care for a family that all has Lyme Disease and co-infections. She asked if I had ever given myself time to mourn. I wondered why she would ask that. She said that I had lost a life, a marriage, a family-life, one that I had expected to have, instead of one that is predominated by illness, medications, medical debt. She said that not only am I a person with a chronic illness, but I am now the caregiver to three other chronically ill people; my husband, my son and my daughter.
I really haven’t given myself time to mourn, and I don’t think that I can actually grasp what outsiders see me and my family go through on a daily basis. I think it is because I am an optimist by nature (albeit one wracked with anxiety!!) as well as being a fighter.
A very quick version of our Lyme Story is that my husband was most likely infected in the 1970’s. He was un/misdiagnosed until 2007. We met in 1990 and he passed it along to me, and then I passed it along to my two children, congenitally. He bacame very sick in 2003-4 and was diagnosed with a variety of psychiatric disorders.
I knew that he didn’t just become Bipolar overnight so as I researched more, I realized that Lyme disease was most likely the actual disorder. He began seeing a fantastic lyme literate doctor who talked to us about the likelihood of me being infected as well. When I tested positive, we had out kids tested. I sobbed as the doctor gave us the results– both of my kids were also very ill.
That was in 2008 and we are still not better. My husband is completely disabled by this and is basically housebound. My kids struggle with being chronically ill teenagers. As for me, its a daily obstacle course of meds (I color code the bottles so everyone knows how many pills to take in the morning and evening), fights with insurance coverage (We paid out of pocket for 6 months of IV abx for my husband until we couldn’t afford to put any more on our credit cards), doctors visits (also not covered by insurance), tracking symptoms, on top of regular life and all while being ill.
But like I said, I am fighter and I will do everything possible to make my family healthy and whole again. I try to spread the word about Lyme disease and my kids and I attended the Lyme Disease Protest and Rally at Union Square last May.
Things have to change in regards to Lyme disease treatment and I plan to make my voice heard.