When I began posting on social media about how Lyme has affected our lives, I was able to ask my daughter who was then 18 for permission to share her story. It is my story too, as Lyme has affected everyone in our family in one way or another, but I am affected as a caregiver....I react to the disease, and my life has been altered by assisting my daughter in any way necessary. However, I am not affected as a patient. I see what it is like to live with this disease, but I cannot claim to know how it feels. My hope in sharing my daughter’s story is that others realize that this disease often requires so much more than 2 weeks of antibiotics.
This weekend, I gave our first financial gift of $1000 to a mother of a seven year old battling Lyme and a co-infection. Her daughter’s story is different than my daughter’s. Her child’s symptoms came on during the late fall, when flu season was just ramping up. When her two daughters both became ill, the youngest recovered, but her older daughter did not. The flu symptoms persisted and her intuitive pediatrician thought to run a Lyme test which came back positive. Was it the flu or was it Lyme all along? Did a jolt to her immune system cause the Lyme to come to light? Sometimes we will never know. Like my daughter, they never found a tick bite, and there was no rash to clue them in.
Unlike my daughter, her daughter is just seven years old; too young to give permission to share her story publicly. Seven years old is too young to project if five years or ten years from now she will prefer that her story be kept private. Seven years old is too young to give permission for the attention that social media can bring.
In wanting to advocate for disease awareness, it is also important to keep in mind the purpose of sharing. I respect this mom’s desire for privacy and the privacy of her daughter. Perhaps one day she will choose to advocate for Lyme Disease, but until that time comes when she is able to fully give permission, Partner in Lyme will help her family financially, cheer her on in every step of her recovery, and pray for her through the ups and down of this complicated disease.