Q&A: Patient Advocate, Madeleine Boyson

Madeleine Boyson is currently pursuing a degree a history, with a focus in art curation. She studied abroad in Oxford, England to pursue this, but ended the trip early because of her chronic Lyme Disease. This led to her eventual need and seeking out of a healthcare community. After receiving continuous positive benefits from her community, Madeleine has become an advocate for the idea. She has joined Peer Health as a Patient Advocate to help improve Peer Health for patients like herself.

What was your experience being diagnosed with Lyme Disease and how has this evolved?

My diagnosis was both relieving and terrifying. I had gone to a mental health clinic with the hope that treating my life-long anxiety and depression would help me “get better,” not understanding what this meant. When a physician suggested I might have Lyme, I was reassured and hoped that a correct diagnosis would result in better—and quicker—treatment. What I hadn’t anticipated, though, was the terror that came from not understanding Lyme and an unknown future. After this, and beginning long-term antibiotic treatment, I experienced a complete shift in how I understood and listened to my body and learned how to self-advocate. My social media community made finding support infinitely easier.

Why did you feel the need to seek out fellow “Lymies?”

I felt the need to seek out fellow Lymies through social media because I didn’t know anyone in “real” life with the disease. Chronic illness creates symptoms and experiences that, if they haven’t happened to you, are very difficult to understand. It was imperative that I find people with similar experiences, if only for emotional support. I started on Instagram and slowly began creating a personal community. I quickly became frustrated, though, as our primary social media platforms were not designed for the purpose of maintaining personalized healthcare communities.

Has this community affected your treatment? How?

The community I HAVE been able to create has been instrumental in emotionally supporting and introducing me to new/different treatment options. While I can (gratefully) trust my doctor, my Lyme community has introduced me to other treatment methods.  I’m more knowledgeable and my doctor’s appointments are more efficient. Just recently, my Lyme-literate naturopath suggested a new treatment for me—Ozone therapy. Because of my social media communities, I was informed and had known others who had tried it. I was more comfortable and the discussion more productive, we determined that Ozone therapy might be right for me!

What role can Peer Health have?

Peer Health is designed with healthcare community in mind, and this makes managing a community much easier. Peer Health is a place I can communicate with people solely about my health care experiences. This is revolutionary because I’ve often felt as though the medical community has discouraged my interaction with other patients or providers. Now, I feel like Peer Health can create a space where patients, caregivers, and providers can come together to crowdsource solutions in a compact way.

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