In 1981 I was 9 years old. I had my first experience with symptoms of my muscle disease. I went to a specialist. This Doctor forgot that he was not God. He was, fairly certain, that he was. His ego was so big that it hindered his ability to live up to the oath he took. Because of him, it took 30 more years to get a diagnosis. But not before he did a little jab, a little dig, a little harm, breaking his “do no harm” before he sent me on my way. He wrote a letter to my pediatrician. I still have this copy at the top. This letter said that he believed my pain was simply psychological. He said that I should continue sports and not be allowed to go to the clinic. What he did should be labeled as abuse. He made a little girl with a muscle disease not be allowed to go to the clinic. And why? Because he just did not know what was wrong with me. He didn’t know so it HAD to be psychological. Because if “God” didn’t know then there obviously was nothing REALLY wrong. How many little girls and little boys did he damage along the way in his job? I remember him well. He told me that he knew I could jump I was just acting like I couldn’t. He made me jump. I was 9. So I jumped. That proved him right and the child wrong. Ha Ha. He won! But children like me did what you told them to. I remember the pain it caused me to jump. He furthered in his letter that I was tender upon palpation but he did not believe that. Instead of saying he just did not know, he said it was not real.
I was unable to get out of bed for an indeterminate amount of time. That period in my life is a blur. I do remember having a home bound teacher. This “Doctor” should not have been “practicing” medicine. Because of him, after I eventually went into remission I did do sports. Because I did sports I did irreversable damage to my muscles. All he had to say was “I just don’t know.”
In 1995 I had a relapse back into symptoms and went to many doctors. As I looked through my chart I found another letter. This one is the second one above. As I started having painful muscles I also became extremely dizzy. We know now this was the time that I contracted Lyme disease, but that Doctor felt it necessary to put in my chart that it was “psychosomatic”. He just didn’t know. And ofcourse he was “God” too and so it was not possible, not fathomable that the all mighty doctor did not know. So he said it was all in my head. He was wrong. Had he continued looking, not slapped on a label of his own ignorance, then my joints would not have the pain they have from Lyme disease right now.
I would not mind the ignorance. I would not mind the defeat of just not finding an answer, if it were not tainted by an egotistical man’s words. Those words discredit my pain. Those words invalidate everything that my body is telling me means something. Those words should be banned from an ego man’s mouth. But they aren’t. They are forever put in my medical chart.
I am headed back to the Mayo clinic in a few weeks. Those words in my chart haunt me. Fortunately, if you read a few years forward you will see my positive lyme disease results, and my positive muscle biopsy results. The results found by a competent, compassionate phenomenal female doctor that has never stopped listening. It makes me wonder, does anyone ever read a chart, see psychosomatic, read further to the diagnosis, and want to call that original doctor up and tell him what a fucking asshole he is?
I called one of the fucking assholes. 25 or so years later he was still in practice. I sent him my biopsy results. I spoke with him on the phone. He was still in pediatrics. I told him, kindly, that my purpose for calling was for him to reread the original symptoms I had, the original letter he wrote denying those sympotms, and the final result after the biopsy 25 years later. I wanted him to never make that mistake again. I thougtht I would feel better. I thought I would put that seed of thought so maybe he would not dismiss and disregard a child again. In his voice I thought I still heard “God” though. My only hope is that the REAL God could somehow tap at his unconsious being and help him to undetstand the gravity of the information that I had told him. I can only pray that is so for the sake of other children.
To be dismissed. To be looked down upon. To be shrugged off. It is demeaning. It is dehumanizing. If you dehumanize a child she or he is more likely to believe that no one will listen, no one will understand, and she or he will start their life bearing secrets. These doctors molded my mind. They put in my impressionable mind that no one believed me. In the years to come of abuse others folowed suit. But they were not Doctors. Doctors have a power to save someone. They should not also have the power to destroy someone’s spirt.
Life is hard enough without having a doctor dismiss us as if we are just another number to check or another box to mark or another spirit to squash. I can tell you had just one of those doctors back in 1981 listened and tried, they would have found out that I had a muscle disease. They also would have found out I was being abused. AND furthermore if they thought it was “all in my head” they had an obligation, a duty, to figure out what exactly IN my head was creating this illness. But they didn’t want to help me. They didn’t want to figure out I had a muscle disease. They didn’t want to explore other posibilities, and they definitely didnt want to ask about abuse.So they left me not only undiagnosed, unvalidated for the pain in my body, but released back to an abuser that they could have discovered had they only, for one second, not been “God”.