He got ill when he was in his forties, I believe. We don't talk about it much and we definitely don't talk about the fact that I am ill. My mother and I talk about it but I don't talk about it with my father because it is just too much for him to bear.
Sadly, he not doing well at all. From what I can tell he is mostly bed-bound.
Were you also disbelieved when you were younger? I remember when I first became ill that the doctors all scoffed at me because at that point they didn't believe it could be genetic.
, for telling me about your father and your family's sad situation.
Well, my story is a long and complicated one. But I will try to keep my answer to your question about whether I was believed as short as possible.
The doctor believed in the series of infections that preceded the decline in my health to a state of chronic illness. The infections began in 1968, my junior year in high school, and after two years, when I was ready to begin college, I had recovered somewhat. I never saw that doctor again so he was unaware that I continued to have problems.
The diagnosis of chronic fatigue syndrome didn't exist, so I had no way of understanding what was happening to me. I couldn't believe in myself and tried to pass as normal. Without thinking about what I was doing or why, I cut back on activities.
A couple of years ago when I re-read my journal from my early twenties, I was surprised at the number of times that I wrote that I had told a friend that I wasn't feeling well and he had ridiculed me.
In 1975 I came down with a terrible sore throat, and as I was recovering, I developed swollen and painful joints, symptoms that led a doctor to speculate that this might be the beginning of rheumatoid arthritis. I hung on to that label of arthritis. But the poor health I experienced included so many more symptoms than joint pain. Any doctor I saw would only want to hear about one symptom and dismissed my suggestion that symptoms were connected.
In 1990 I was diagnosed with chronic fatigue syndrome. A brother and his wife, who both work in healthcare, scoffed at the diagnosis -- no such thing! Since then others have dismissed the diagnosis of chronic fatigue syndrome as a real medical condition or simply laughed when I told them what was wrong with me. To this day people aren't prepared to believe just how sick I am or have been through the years.