Humans of ME/CFS

In 1994, I graduated with my Master’s Degree in Intergenerational Studies. I advocated for children, families, and the elderly. I started the Texas chapter of Generations United. I was a healthy 34-year-old married working mother about to train for my 1st half marathon. Then on Thanksgiving Day in 1994, I went for my usual 2-mile jog. Afterward, I lay down on the sofa and took a nap. When I woke up, I knew something was terribly wrong. The fatigue was so crushing I knew I would never run again.

Within 5 months, I had to quit my job because the cognitive symptoms were so severe I could no longer recognize words or follow a conversation. I knew ME/CFS was not medically recognized, so when I quit my job I said it was to start my own business. No one knew I was really sick except my husband. No one would’ve believed me anyway because I looked perfectly normal on the outside.

It took 6 months to leave my professional and personal life before I was able to truly stop and rest. When I finally did, I only got sicker. I was bedridden for the first five years. I couldn’t listen to music, read a newspaper, talk on the phone, or do anything for more than a minute. I could not be upright or the flu-like symptoms would be worse.

While resting, just the slight movement of turning from one side to the other would exacerbate all my symptoms. I’d go weeks without bathing. How I managed to be a mother to my young son I don’t remember.
My husband would come home from his job in the middle of the day to feed me lunch—that was until the gastrointestinal symptoms started. I tried every diet possible. I went from 125 lbs to 97 lbs in just 2 months.

That’s when we really got scared. We thought I might die.

I was finally diagnosed with ME/CFS in 1998. I received Social Security disability, saw a specialist, and tried medications and vitamins. I have 13 volumes of journals from that life-altering time period. No one understood, so I cut off all ties with family and friends in the real world. I lived in the world of sickness with ME/CFS. I struggled to exist daily and to make sense of it all for the next 23 years.

Over time I got stronger and found medication to address specific symptoms. I’m a textile artist now and can function. However, I still must sleep ten hours a night, rest every afternoon, and if I exert myself too much I relapse for weeks or months. In 2016, I did too much and was bedridden for the first ten weeks of 2017.

The public world still does not know I struggle with ME/CFS daily, but I consider myself one of the lucky ones.