I was only 11 years old when I got ME/CFS and my life changed forever. Before ME, I was a normal, happy kid. I loved going to school and got straight A’s. I was that crazy kid who couldn’t wait for school to restart after a break. I also loved music. I played the piano every day, sang in the Tampa Bay Children’s Choir, and loved performing. I enjoyed playing tennis and running. A world of possibilities was ahead of me.
Then July 11, 1992 everything changed. On the last day of our vacation, I got sick with what seemed like a nasty summer cold. I never got better. The fatigue, headaches, nausea, and brain fog quickly overwhelmed my life. I had to quit school before the year was out. I lost the ability to do all of the things I loved. While I was diagnosed in only 8 months, it took another 7 years to find a doctor that could treat my symptoms. All I could do was endure and hope there was help on the horizon. Thankfully, there was.
As an adult, I thought I had a good handle on my condition. I was still disabled, but I had gained a lot of function and had regained some of the things I loved to do. Then, three years ago I started getting worse for no reason I could determine. By the end of 2020, I felt like I was living in a permanent crash. It was like I got sick all over again. My old doctor had retired, and my current doctor didn’t know enough about ME to help. I didn’t know what to do. My old coping mechanisms were no longer working. I felt adrift in a sea of uncertainty.
That is when I found the Bateman Horne Center’s support group and website. The support group gave me a place to talk about the illness and tools to deal with the fear and grief I was facing. They gave me the language to talk about what I was going through with my loved ones. My family was supportive and wanted to help, but couldn’t until I learned how to express my experience. Listening to other people talk about their condition helped me recognize and to explain my own.
The BHC website has been such a valuable resource. The materials on orthostatic intolerance helped me to realize I had an underlying condition which had never been diagnosed. Then, the BHC video on overcoming barriers to medical care taught me how to effectively communicate this knowledge to my doctor. Thanks to BHC, I have begun an OI (orthostatic intolerance) treatment that is expanding my energy envelope. I credit these resources for my ability to successfully get on the path to quality medical care.
I am so grateful I found the Bateman Horne Center. After 30 years of illness, you would think I would know everything there is about ME/CFS. But, there is always more to learn. BHC makes that learning easy and that has directly improved my quality of life. They give me hope for the future.
Everyone deserves INFORMED medical care.
That is why Bateman Horne Center is teaching medical professionals how
to diagnose and manage ME/CFS, fibromyalgia, and long COVID.
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