My 36-Year Journey with ME/CFS and FM

by | Nov 17, 2022 | BHC News, Fibromyalgia, Impact Stories, ME/CFS, Patient Voice

Prior to becoming sick, I worked a variety of jobs including an orthodontic receptionist, dental assistant, massage therapist, yoga instructor, answering service operator, waitress, cleaner, and costume jewelry designer and maker. I loved riding my ten-speed bicycle ten miles or more daily as I didn’t own a car, especially on roads with mountain views. I hiked, swam, cross-country skied, and was involved with community theater for ten years. I’ve always been and still am interested in the arts and creativity.

Illness onset was sudden for me. It was during Christmas time in 1986 that I thought I had been hit with some kind of flu. I took two weeks off from work at the orthodontist’s office, then returned. Six weeks later I was sick all over again with fever, muscle aches, sore throat, headaches, and general malaise. I assumed this was a sign that I didn’t want to be working at the doctor’s office anymore and I quit. For the next few months I was at home resting and recuperating but never got better than about 80% of my previous capabilities. Since then, my functionality has declined quite a bit. It took five years for me to be diagnosed with ME/CFS (which at that time was called CFIDS and fibromyalgia).

The Bateman Horne Center programs and resources impact me in multiple ways.
– The support group sessions on Zoom are SO helpful. Both Meredith (LCSW and moderator) and Tahlia (education director and facilitator) have a lot of knowledge and experience with these illnesses, and I get the extra benefit of other participants sharing as well. I’ve also noticed that I feel less shame about having the illness.

– My ability to communicate and address symptoms with my medical providers has improved thanks to what I learn from BHC. The website is also a great help but due to my cognitive impairment it is also difficult for me to do all the reading involved. So, I appreciate the provider question and answer sessions on Zoom even more for this reason. I printed out some basic illness information and gave it to my primary care provider along with the BHC website. She has been interested and more helpful to me because of it.

– My anxiety has diminished a good deal due, I think, to medications and pacing. Although I dislike it, lying down and resting with my feet up all throughout the day has been helpful to me. So has letting my body lead my behavior to sleep and rest as much as possible.

– The greatest help has been having a doctor who knows more about this illness than I do. I had become so frustrated and exhausted trying to explain it to my medical providers. I used to say that if I just had a provider who knew more about ME/CFS and fibromyalgia than I did, I would be much better off. Drs. Yellman and Bateman are definitely that, and more.

– I’m now able to read two to three paragraphs at a time, an improvement from not being able to read or write at all for a number of years. I also have more energy due to the medication Dr. Yellman has prescribed and he has been very attentive to and helpful with the difficulties breathing that I’ve experienced since 1997. I still must be very careful not to push the abilities I have.

I am very grateful to be connected with a clinic where the staff understands and does not diminish my illness. It has improved my quality of life.

A person with ME/CFS and Fibromyalgia
Cleveland, Ohio

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