I remember it as if it were yesterday. That day in 2004, after a particularly stressful morning, I had to go to my dentist for an emergency root canal.
Under one of my crowns was a big infection and so after the procedure, I went home from work that cold afternoon and piled into bed. I figured in a day or two I would start feeling better, but I didn't. I had flu-like symptoms, body aches, headache and fatigue. After a couple of days at home, I returned to work, but I just could not shake it off.
After a month of feeling bad, I went to see my general practitioner and she ran some tests. That was the first day in a long succession of blood tests, hospitals, EKGs, EMGs, EEGs and every other test you can imagine. I was referred to doctor after doctor and all anyone could say is that something had " assaulted my liver." They guessed it could be a virus or maybe some kind of toxin, but everyone was guessing. Things got so bad that one doctor solemnly asked me to call if I started turning yellow. That was comforting.
I was an active person before this all happened. Maybe too active. I started to blame myself for what was occurring. Perhaps I am just suffering from burnout and will soon get better. But I didn't get better. I kept getting worse. More doctors, more tests, no answers. I was on the Internet trying to find something that matched all of my symptoms, but they were so vague that I could have had any number of things.
I trudged along, hoping a change of address, change of workload, change of anything would do the trick. By 2008 I had spend around $80,000 out of pocket on this thing and all I had to show for it was a tax deduction. I could no longer work and had to sell my business and file for disability. After I filed my claim I finally had a name for what was happening to me, Chronic Fatigue Syndrome.
I had heard of it before, remembering that cluster up in Incline Village some years ago, but I was not well versed on this illness.
With a diagnosis of CFS came something I never would have thought: Ignorance and prejudice. This came from the medical community as well as the general population. "It is all in your head" or "just get some rest and reduce stress" were things I was hearing on a regular basis. Even my friends and family preferred to dismiss my diagnosis.
I was a person who had worked without interruption since age 17. I enjoyed white water rafting and diving. Now I was a crazy malingerer. Insurance companies were the worst discriminators, not wanting to acknowledge that CFS even exists for fear they would open the floodgates for claims.
Today, I am mostly homebound. Flareups can often leave me in my bed for weeks at a time. I am too fatigued to do anything anymore. My dogs no longer get walks or play. We all just lie around watching the clock tick as the pain is so severe that 5 seconds can seem like 5 hours. When I can, I work on all the insurance claims that are piling up unpaid. This is not what I had hoped my life would be like at 52.
I now understand how HIV-AIDS patients must have felt at the beginning of the outbreak. Ignorance and fear claimed many lives. Isolation and lack of hope claimed many more until it was determined that a virus was causing the disease.
Many still alive today can remember when cancer was thought to be a psychiatric disorder as was multiple sclerosis and scores of other diseases. Until a disease is given credibility by the Western medical community, it does not exist. Neither do its sufferers.
Much is known now about Chronic Fatigue Syndrome " officially named myalgic encephalomyelitis " and still its victims suffer. There still is too much ignorance out there and a perception that it is some yuppie disease that impacted some people up at the lake many years ago. It is no big deal and besides, it will never happen in large numbers in the general population.
Think again. It is estimated that more than a million people currently live with CFS in the United States alone and the numbers are growing rapidly as diagnosis becomes easier.
I remember thinking one day last year that cancer patients were lucky. Their malady is known and treatment is available. If treatment failed, they died. People with CFS are afforded neither option.
Ignorance is unintentional cruelty.
- Carol Perry has lived in Northern Nevada since 1983. A retired financial consultant, she writes a financial column for the Nevada Appeal . You can reach her at carol_perry@
worldnet.att.net or 267-5358.