The Journey of Self-Advocacy and Seeking Answers

In honor of May being Lyme disease awareness month, I wanted to shift gears for the next few entries before getting back into treatments and therapies. It's important to discuss the role of advocating for your health and not stopping until you find answers. Most of you know, living with Lyme disease can feel like navigating a maze without a clear end. The uncertainty, mixed symptoms, and confusion around diagnosis and treatment can overwhelm anyone. For those on this journey, self-advocacy is not just helpful...it's essential!

The Importance of Self-Advocacy

Self-advocacy is critical when facing complex health issues like Lyme disease. Many patients find their symptoms dismissed or misunderstood by healthcare professionals. This reality pushed me to take charge of my health, demanding answers instead of waiting quietly.

In my early experiences, I visited numerous doctors, sharing my symptoms—fatigue, joint pain, severe headaches, cognitive issues and the list goes on. After many appointments, I realized that simply describing my symptoms wasn't enough. I had to actively engage with doctors, request tests, and propose possible diagnoses that might have been overlooked. My husband and I had to fight hard for answers and no one seemed to pin point what was wrong even after two positive ELISA test results and multiple bands on the Western Blot.

During my journey...there were times early on where I was not able to advocate for myself, specifically when I was in the ER. My husband has been by my side every step of this journey and was my advocate when I couldn't speak for myself. He talked with doctors and demanded answers as we knew something was very wrong. It is so important to have a voice and if you cannot advocate for yourself, make sure your support system has your back!

Navigating Health Care Challenges

Navigating the healthcare system has been one of my biggest hurdles. Pushing medical professionals for answers and refusing to be dismissed has played a critical role in my journey. When your symptoms don't fit into a box it's easy to be passed from doctor to doctor. It has not been an easy road and despite getting passed around, we kept pushing and eventually it led to my diagnosis and the doctor I currently see. (Thanks to a family friend) Speaking of health care challenges and Lyme...I could go on and on about insurance companies and Lyme. Let's just say...insurance companies are often resistant to covering specific tests or treatments for Lyme disease.

The Power of Communication

Effective communication with my healthcare team became a cornerstone of my self-advocacy. I learned that being open about my experiences—what worked or didn’t—created a collaborative environment. This mutual understanding has not only enhanced my treatment but also fostered a sense of teamwork in managing Lyme disease.

Embracing the Journey

Navigating Lyme disease is undoubtedly challenging. However, embracing self-advocacy can make a significant difference. By pushing for answers, staying informed, and communicating openly with healthcare providers, you can greatly enhance you path to health and wellness. Though the journey may be riddled with obstacles, the empowerment that comes from advocating for oneself is crucial in reclaiming life from Lyme disease.

To anyone on this path to finding answers...Don't give up, keep pushing and keep advocating! You know your body best!