Welcome to the first-panel discussion for Invisible Not Broken. My co-host Kyros and I are going to be talking about the most elusive and mythic beast in Invisible Illness world: getting the diagnosis.
For many getting sick is a simple visit to a doctor. They figure out what is wrong and prescribe a treatment plan.
When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies.
I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.
We will see you next week to talk to me. Yes, I realised I had been so excited about everyone's interviews I forgot to post mine! Tune in to hear me on the other side of the interviewing process talking about ligaments that are more used post-its than gorilla glue, the joy of dislocations from getting out of a chair, a heart that beats to its' own rhythms and whims, and the wide spread joy that is fibromyalgia.
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Until next week
Be kind. Be gentle. Be a badass.