Humans of ME/CFS
My story begins in 1994. I was 29 at the time. I was a mother to a beautiful daughter who was 10 and married to my high school sweetheart. I worked full time in the healthcare industry and instructed aerobic classes at the local YMCA. I loved the outdoors.
I awoke one morning in April with a high fever, swollen glands, chills and “brain fog.” I thought I had the flu, but it never left. I was exhausted all the time. For months I sought the help of numerous doctors who checked me for everything from Cat Scratch Fever (I had adopted two feral cats from a farm who were infested with fleas and ticks) to Lupus, Lymphoma, MS, Thyroid Disease, …the list goes on. Needless to say, they never figured out what was wrong, and I was finally diagnosed with CFS in 1996. My doctor was useless in helping me with my symptoms. (Note: I had a positive Lyme test in 1998, unknown to me, which I did not receive treatment for.)
I had horrible abdominal pain and weight loss and a cholecystectomy was done in 1998. I still suffer from these symptoms today.
I had disability insurance who declined to pay my benefits if I did not submit to neuropsychiatric testing because of my CSF diagnosis. I was forced to work part time and give up my aerobic instructor job. I was ultimately discharged from my employer (a local hospital) whom I gave 20 years of my life to. We almost lost everything we worked so hard for. And the impact was worse for my family, who didn’t understand this illness, watched me suffer and could do nothing to help me. The psychological impact on me was almost unbearable. Many people I loved questioned my debilitating illness. I felt like a failure and as my doctor said “well, you won’t die from it.” No, I have not died from it but at times, I wished I would have, even now.
In May 2000, I suffered a rt. thalamic stroke. I have deficits that affect my left side. As a result (and because the MDs couldn’t find another cause), I had an atrial PFO closed with a device being studied/tested at New England Medical Center. In 2006, I discovered a positive Lyme test performed during my hospitalization for the stroke in 2000. I was never treated for the Lyme Disease. So, I have two highly controversial diseases. I believe that we will find a link between CSF and a chronic, untreated viral infection (ie: Epstein Barr virus, Mononucleosis, Lyme Disease, etc).
I want people to understand that we are not lazy—this is not all in our heads or fabricated—this is real and not made up. We have such a difficult time getting through our day. We need advocates to speak for us because we are too sick to fight and speak for ourselves.