Humans of ME/CFS
I have lived with ME/CFS for more than forty years. When my symptoms first occurred, I was diagnosed with the flu during June, July, and August during off-flu season. Doctors suspected that I was a hypochondriac. However, I held a very demanding administrative position, a job which I loved and to which I gave high commitment. After experiencing multiple tests and my husband insisting on a wrong diagnosis I was sent to a psychiatrist. The psychiatrist determined that I was indeed ill and that the doctors had not found the source of my illness. I took inordinate time off with the “flu” and with reoccurring brain fog. This went on from about 1970 until I was forced to retire in 1980.
I was compelled to retire at age 53 when I reached the point of debilitating fatigue, reoccurring brain fog, and general instability. My life became one of a bed-ridden person with an illness for which there was little or no understanding and no specific medical treatment.
Finally, a doctor announced that he had found a new disease which he called Epstein Bar Syndrome and that this was my diagnosis. My doctor said that he knew what I had and that I could feel some relief in knowing that there was a name for my illness, however he had no treatment. I was advised to follow a nutritious diet, heavy fruits, vegetables, and protein, and was given multiple vitamins on a daily basis. I was still sick. My husband, a former physical education teacher engaged me in a walking program when I was able. Short-term that was helpful and now at ninety years of age, I attempt to walk and engage in an exercise program as tolerated. At this stage of life exercise involvement puts me out of commission for days, almost to the point of intolerance. Fortunately, I have a positive attitude.
Prior to moving back home, I was a member of a Chronic Fatigue Support Group. Over time, I became one of the most sought-after support group members. My fellow sufferers appreciated my positive spirit, uplifting advice, and sense of humor. It gave me much joy to be able to positively uplift people, mostly women, who had lost hope and increasingly found themselves isolated. A number of the support group members experienced husband desertion. Some had husbands who simply didn’t believe their illness.
My husband and I were in a near fatal car accident in 1997. My husband experienced brain trauma and damaged internal organs. He was partially disabled until his death in 2012. With home aid, I engaged in his caregiving and made every attempt to bring joy to him and our home life. With careful pacing, I was able to assist him in ways that I never dreamed possible. He was so loving and so grateful. I always remember his steadfast disagreement with the doctor who thought me a hypochondriac. He believed in me and stood by me through my long years of suffering with ME/CFS. Now it was my turn to love him and stand by him by bringing as much joy into his life as possible. After his death in 2012, I returned to my birthplace to live with my adopted daughter and family.
I find that exercise which was once my helper is no longer so. I know that I “must use it or lose it”, but the cost is sometimes too great.
Clearly, insufficient research and a lack of showcasing this illness to the American people is shameful. ME/CFS patients are alone, ignored, totally misunderstood, not only by the public but by medical school science. I have wonderfully trained physicians who care. I have not found one who knows anything about ME/CFS or offers specialized assistance. When I asked my primary doctor for a referral to a doctor who sees ME/CFS patients, I was told “I don’t know any.”
Negative stress is intolerable for me. I am fortunate to live with the love of a daughter, caregiver, family, and friends and that I have a purpose driven life establishing a student aid mentoring ministry at my church. I am highly motivated to be productive every day and positively impact the lives of students.