Humans of ME/CFS

I came home from work on Dec. 8, 1980, feeling sick from a flu-like virus. I was out sick for two weeks, before limping back to work for the last of the month, but never felt the same again. By May of 1981, I developed a full blown case of what later became known as CFS. I was bedridden for a solid week until the debilitating fatigue let up. Thought it might have something to do with allergies at the time, but it never went away.

I later lost my job, and struggled to find some kind of work I could still do, even going to a business school for training. Afterwards, I got a job in the composition room at our daily newspaper, but lasted less than two months until I became too tired to do the job and was let go. At that point, I decided I needed to apply for Social Security Disability.

First, I had to try to find out what was wrong with me physically. I had to go to a local community hospital clinic to start the tests, since I had neither money nor insurance. As there was no name for the malady at that time, Social Security kept turning me down, and I had to keep appealing my case. It took four years of testing until I was finally diagnosed with CFS, and I could get approved for disability, though my appeals went all the way to the U.S. District Court of Appeals, just short of the U.S. Supreme Court level.

During this time, I had to move in with friends for a year. After that, I managed to find an apartment that was income-based, and my “income” from welfare was so low that not only did I not have to pay rent, I would go to the apartment office each month to receive utility payment assistance.

Being able to finally qualify for Social Security Disability payments has been a blessing, but it took SO long to get them. I’m now going on 62, and haven’t worked since the 1980s.