90-year-old talks about 40 plus years with ME/CFS

[Merry]

Conella B.'s story is featured today in Solve ME/CFS Initiative's "Humans of ME/CFS."

Her story caught my attention because the last few years I've been thinking more and more about the plight of elderly ME/CFS patients. I am old myself, and I have a close ME/CFS friend in her seventies, and her older brother, who must be around eighty, also has ME/CFS.

 

[Abrin]

My father was one the first cases diagnosed in my country. He is in his 80's now.

 

[Merry]

My father was one the first cases diagnosed in my country. He is in his 80's now.

I'm sorry, @Abrin, for your father and for you. When did your father become ill? How is he getting along now?

My mother was also ill. She would've been 88, but she died a few days after her 67th birthday.

 

[Abrin]

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.

 

[Wayne]

Conella B.'s story is featured today in Solve ME/CFS Initiative's "Humans of ME/CFS."

Thanks for sharing Merry. I enjoyed reading her story. What a sweet woman...

 

[Merry]

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.

Thanks, @Abrin, 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.

 

[Abrin]

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.

As embarrassing as it is for me to admit to myself, a huge reason why I haven't worked hard at tracking down a doctor to who can give me an 'official' diagnose of ME/CFS is because of how my father was treated because of his diagnosis. As the years went by, I watched how people's two-bit judgement picked apart his soul piece by piece. Truth be told, I have a huge amount of anger inside me. Anger at the people who never believed him, anger at society for making him feel like less than a man when he became too sick to be able to be the breadwinner for his family anymore and especially anger at the researchers behind the PACE trail for holding up actual research FOR FIVE YEARS until a court order could make them release their faulty raw data.

These last few years have been really bittersweet for me, on one side I feel happiness and hope because more and more research is showing markers of an physical disease which means I might actually get a shot at having a few years of life where I can enjoy the world outside of my bedroom but then on the other hand I am hit with the heart-breaking realization that my father will be long dead before any of it is helpful to him and for what? The ego of scientists? The lack of empathy from the majority of humanity?

I truly hope that someday we will all be vindicated @Merry. You, me and my father. I hope that history will look back at those who scoffed at us with horror. That they will look back towards the past with the same disgust as we have now when we look back at photos of those who performed lobotomies.

I hope that history ends up judging them as harshly as they have all judged us.

I know it is petty thing to hope for but you gotta live for something right?

 

[Merry]

As embarrassing as it is for me to admit to myself, a huge reason why I haven't worked hard at tracking down a doctor to who can give me an 'official' diagnose of ME/CFS is because of how my father was treated because of his diagnosis.

@Abrin, I understand your reluctance, because of the way your father was treated, to seek out a doctor yourself for a diagnosis. One of the reasons I don't like going to doctors is because even as a young child I understood that my mother was not taken seriously by her doctor. At an early age I learned from her, as she bitterly reported on the results of an office visit, the word -- the curse the doctor cast upon her -- psychosomatic.

Truth be told, I have a huge amount of anger inside me. Anger at the people who never believed him, anger at society for making him feel like less than a man when he became too sick to be able to be the breadwinner for his family anymore . . . .

I understand that your father and your family had a different shame to struggle with because of expectations he should be the breadwinner. My mother was a housewife; her problems to some extent could be hidden away.

Although I have more to say, I just can't go on now. Sorry, Abrin. Perhaps breakfast will revive me.