Being sick with a chronic illness like Lyme is challenging. GLA's Peer-to-Peer Mentor Program helps Lyme warriors find support.
When I began my journey with Lyme disease, I craved for advice from someone who had “been there.” I constantly searched for blogs or articles written by people who were sharing their stories. More than anything, I was in such a raw and vulnerable place, I was looking for someone who could be vulnerable with me and share their true experiences living everyday with Lyme and tick-borne disease. I was lucky enough to have a family friend with Lyme who could talk to me on a level no one else could, but I also longed to connect with someone my age. Being sick in your early twenties is so challenging because your peers seem to have boundless energy to seize the day. Eventually, I connected with people my age and those have become some of my strongest bonds. The Global Lyme Alliance Peer-to-Peer Mentor Program helps Lyme warriors find support faster and fosters a sense of community. I decided to become a mentor to make sure patients always have someone who truly understands them.
If you have considered becoming a mentor to Lyme patients after dealing Lyme disease yourself, I encourage you to do so. With 476,000 people diagnosed with Lyme disease in the United States EACH year, there is always a need for mentors to help guide those newly diagnosed. Not only is it beneficial to the mentee but being a mentor has helped give a little purpose to my pain. Tick-borne disease can be such a confusing space. There are many opinions and approaches, and it’s easy to become overwhelmed. By being a mentor, I’ve been able to use my hard won understanding to guide my mentee through the unique challenges and frustrations these diseases present. The emotions around illness and the frustrations of tick-borne diseases are still fresh for me, and I use my position as a mentor to be a safe and nonjudgmental place for my mentee to express all that come with this diagnosis.
Another great word for mentor is “advocate.” Being a mentor means being an advocate for your mentee. While you often do not live in the same area, you can still advocate by ensuring they are aware of the resources available to them if they are dismissed or pushed aside. This takes many forms, but it can be as simple as directing them to the Global Lyme Alliances’ database of Lyme treating healthcare providers or helping them gain the confidence to advocate for themselves during an appointment. However, mentors don’t provide medical advice to their mentees. For one thing, most of us are not medical professionals and even mentors who practice medicine are not interacting with their mentees in a healthcare setting. Additionally, the treatment for Lyme and tick-borne diseases is incredibly individualized. What works for someone may not work for another. Instead, offering emotional support, truly listening and validating the experiences of your mentee, and directing them to the right resources can make a world of difference. The isolation barrier illness creates is so strong. Consider breaking through and becoming a Global Lyme Alliance mentor.
After struggling for 10 years, Maddy was finally diagnosed with neurological Lyme disease in 2018. Since her diagnosis, she has struggled with Babesia, Bartonella, Anaplasma, Mycoplasma, dysautonomia, PANDAS, epilepsy, PTSD, and other chronic diseases. As a Global Lyme Alliance Ambassador she aims to educate and spread awareness about a disease that so many spend years suffering with before receiving a diagnosis. She is planning on attending law school next year to study public health law to advocate for those with chronic illnesses, while pushing for the better treatment of Lyme patients. Maddy currently lives in Upstate New York working on her Lyme blog @maddymeetslyme while undergoing treatment.