Sometimes I look back on all those years and doctors, and I’m stunned by the flippancy with which I was treated. Yet I know even my experiences are tame in comparison to what I’ve heard from other Lyme patients. I remember a time when yet another doctor scolded me for looking up my symptoms on the internet, for not trusting him to do his job. But it was only by trusting myself that there was something more going on here, that there was some complex piece to this health puzzle that had yet to be resolved, that I ended up saving my life.
Over the years, I’ve learned to become my own health advocate, to speak up when a diagnosis or treatment doesn’t seem right. I’m formidable. I ask question after question and demand the reply. As Lyme patients, we don’t have a choice. While the medical community is slowly learning thanks to increased awareness, many patients continue to fall through the cracks, misdiagnosed with Band-Aids placed on aggravating symptoms, concerns dismissed with a flippant wave of the hand or those few damning words: “It’s just a virus.”
There’s one thing I know for certain now, after all this time: We are worthy of answers.
It has been a pleasure and a privilege to partner with Global Lyme Alliance this past year. As I move on to new ventures in Lyme advocacy, I wish to extend my greatest thanks to such an esteemed organization for the opportunity to share my experiences.