From Struggle to Purpose: Why I Started Makers for ME

Before ME, I was someone with boundless energy. I was a trail runner, an avid concertgoer, a yoga enthusiast and instructor, an active volunteer, and someone engaged in various hobbies. Some even nicknamed me the "Energizer Bunny" for my ability to keep going without slowing down. But everything changed in 2014 after a camping trip, where a tick bite set me on a journey I never anticipated.

That tick bite led to a Lyme disease diagnosis, and soon after, I found myself constantly visiting doctors and spending a lot of time in the ER. After years of searching for answers, I was diagnosed with multiple health conditions, including Myalgic Encephalomyelitis (ME). Of all the conditions, ME has proven to be the most challenging to live with.

Before my illness, my mind and body were aligned—full of strength and energy. Now, I constantly battle between a mind that wants to keep moving and a body that can no longer physically keep up. I have had to physically slow down and modify my life significantly to manage symptoms.  The grief of losing the life I once had has been a heavy burden to bear, but in the midst of this struggle, I’ve found purpose in building and engaging with the community.

Due to the stigma I’ve faced from medical professionals and, sadly, even well-meaning people in my life who simply don’t understand what living with ME is like (which is not their fault, but a byproduct of a lack of awareness about ME and prevailing ableism), I have not been open about my struggle. However, the silence and lack of understanding have often made this journey harder. I’ve come to realize that raising awareness is too important, and it’s time to share my story. I want to shed light on the reality of living with ME and contribute to a cause that will help so many others facing similar challenges.

Living with a chronic illness often means not only battling the condition itself but also fighting for the support we need. Some of the most resilient and positive people I know are those living with chronic illness, but the skepticism and misunderstandings we face can be one of the most exhausting parts of our journey, transforming positivity into hopelessness.

Well-meaning individuals often share stories of extraordinary accomplishments by people with disabilities or those who have "recovered" from ME or other complex chronic illnesses through the "right diet" or regimen that promises complete recovery for those desperate to restore their health. However, what many don’t realize is that these stories don’t reflect the daily reality for most people living with chronic illness. Disability is not something we simply “overcome.” It’s about learning to live with it, navigating its challenges, and adapting to a new way of being. The key to thriving with a disability is having people who listen, understand, and believe in our experiences without judgment.

The most supportive thing we can do for those living with chronic illness or disability is to honor their truth and validate their experiences. When we listen and believe, we build a foundation of trust and understanding that enables people to live well, despite the challenges they face.

While my physical limitations have transformed my life in unexpected ways, they have also allowed me to redefine what strength and resilience mean. Through my work with others who face similar challenges and my own lived experience, I’ve discovered the power of connection, shared experience, and mutual support.

I’ve worked in diverse roles, from coordinating and facilitating peer support programs to developing wellness and recreation initiatives for the disability community. I’ve also conducted outreach work and provided support and training for individuals and peer support volunteers who tirelessly support others living with complex chronic diseases and their caregivers. I’ve always found fulfillment in helping others and creating spaces where people can thrive, no matter their challenges.

Through all of these experiences, I’ve learned that true strength lies in resilience—and sometimes, that resilience is found not by pushing forward, but by leaning on each other. That’s why I’m proud to create Makers for ME—a movement I hope will champion resilience in the face of adversity. 

Through Makers for ME, we aim to build a community that not only provides practical support but also educates and raises awareness about the reality of living with ME. By selling handmade goods, hosting workshops, and coming together as a collective, we can help fund crucial support for people with ME and create a sense of belonging for those who need it most. This initiative is about more than just raising money—it's about making a lasting impact on the lives of those living with chronic illness and showing the world that we deserve compassion, understanding, and hope.

-Mel