Experts by experience…

expert 1One long poem..

It’s so great to know everything and even after years of diagnoses lacking in investigations and not finding genetic malformations or real diseases changing life from one of health to pain and malfunctioning always told the same thing there is nothing wrong with you other than you are a type A personality or going through a stressful period in your life or then you are given a diagnosis that turns out to be wrong for the second third and fourth times making you look stupid and making some think and even say you are not telling the truth and then also causing significant stress as you come to grips with it but then told no you don’t have it and that you have something else over and over and still no willingness to listen to the knowledge of ones own body or another’s science or evidence of something wrong too stubborn or arrogant to believe a patient would know anything about their own body or health the older I get the more I realise the less I know if only doctors and scientists would accept that simple truth it would help patients so much but mostly they say or imply they know everything and you know nothing if only that was even close to the truth even as the ramblings of the person who lives in their body 24 hours a day is ignored and more recently my accountant was diagnosed with three or four different diseases over a period of three or so years constantly going through the fear of the new diagnosis and feeling like an idiot about having told his family and friends about the first and consequent ones then finding a diagnosis everyone agreed with only to find he then also had bowel cancer forcing him to retire earlier than planned so much trauma and stress although this poem can only tell of some stories there are so many more it could talk about the people who are disillusioned and talked over and down to but who are the real experts of their own bodies so stupid the educated ones think they know everything if only they all would say what is happening how are you FEELING what can you tell me about your own body what is it like for you not but nothing shows up in the tests I ran so there is nothing wrong with you… you really do have to love those experts… thankfully there is a new group of people emerging all around the world, known as experts by experience, that is experience of living with a disease or disability and knowing it intimately when to ask for help when it is getting worse even if tests can’t prove it is so bring on the experts by experience I say changing the world by helping themselves… and a comment from the author, this was an experimental poem, so please accept my apologies as I realise it is incredibly dementia unfriendly…

4 thoughts on “Experts by experience…

  1. It’s all about manufactured fear my friend. They need it to keep us off centered and in control. Yes, the experiencer is truly the expert as you say. Think about it. Why would we think what someone learned in school in books was more worthy than the experiences of someone actually going through it? How insane is that! So Dr. Kate, keep your white lab coat handy and keep up the great tutorials. Maybe some physicians might read your words and learn a thing or two! Blessings….VK

  2. Love it…..I hope you stopped to breathe from time to time while writing that.
    How do you feel? Now that’s a revolutionary way of seeking a diagnosis! I don’t think they teach that at medical school. Please excuse my cynicism. Strength and power to you Kate.

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