Living with ME/CFS is not only debilitating, but life-altering. This is especially true for a young adult planning for a normal future. It has been sixteen years since I was diagnosed with ME/CFS. At the time I was only 14 years old and had hopes of a bright future for myself. I dreamt of socializing with friends, traveling, attending university, having a successful career, and creating a family, all of which changed drastically. The fatigue, migraines, sensory sensitivity, and vestibular and cognitive dysfunction have forced me to redefine how I view a fulfilling life. Although I struggled with these symptoms, I kept pushing myself to attain at least a part of my previous dreams. In graduate school, however, I crashed to the point of being bedridden in 2018 while trying to complete my educational goals. I was fortunate to have family who could care for me for several years when I could not care for myself.
Post-graduate education and a science career are now out-of-reach goals. It took years to recover some level of normal functioning and to find a new baseline of activity that I could maintain. During this time, I found myself rebuilding my sense of self-worth. Although I felt like my body was betraying me, I came to realize that my value as a person is not determined by my activity level or the goals I will never achieve. I now find meaning and value in different ways.
Both of my parents and brother are scholars working in higher education and biological sciences. A few years ago my mother, who is a scientist, attended a conference at the NIH where she met Linda Tannenbaum and the rest of the OMF Research Team. She was touched by how compassionately the OMF team interacted with her. She felt that the OMF community understood the challenges of patients and caregivers at a level that she had not experienced before. Immediately my mother felt that Open Medicine Foundation was where hope could be found for me and all those living with ME/CFS. My mom shared that she knew she needed to do whatever she could to support research that would have a direct impact on people’s lives, including mine
“Open Medicine Foundation’s approach to collaborative interdisciplinary research is exactly what the ME/CFS community needs. The problem is here, I see it every day in my daughter. We all need to come together and be a part of finding answers. Become a Hope Builder, donate, fund the research that is needed to make a difference.” – Theresa (Erica’s Mom)
Please consider supporting Open Medicine Foundation and support the research that provides real hope for the ME/CFS community.
Sincerely,
Erica
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