Raven’s journey to be diagnosed with cyclic vomiting syndrome (CVS) was deeply traumatic, not only due to their debilitating disease but from the way doctors treated them along the way. CVS is characterized by episodes of intense vomiting that can be severe enough to warrant emergency care. Raven says it’s not just throwing up, it’s constant vomiting that you cannot stop, which becomes dry heaving when you are depleted of all food and fluids.
Raven first started experiencing episodes of cyclic vomiting when they were just 6 or 7 years old, but had no idea why it was happening. These episodes followed them into adulthood, where they discovered that medicinal cannabis provided relief for some symptoms. They disclosed this to a doctor, one of many who brushed off their symptoms as being anxiety related. In fact, this doctor listed on their chart that Raven was an illicit drug user with an eating disorder. Instead of providing any help for Raven’s then-mysterious ailment, this doctor doomed Raven to years of extreme prejudice and neglect from future healthcare providers.
Through researching symptoms Raven found cyclic vomiting syndrome as a potential diagnosis, but it would be years before any doctor would listen to this hypothesis. When they finally convinced a doctor to test this theory, CVS medication proved extremely effective. Their disease is now in remission and their diagnosis has been officially recorded. Although this moment was deeply validating, it also brought up deep anger that Raven wasn’t listened to sooner.
In this episode of the Major Pain podcast, Raven talks us through their torturous diagnostic process and teaches us about their rare disease. They tell us about the three types of CVS, the migraine variant, seizure variant and mitochondrial cell defect. Now that they can keep down food and water thanks to their CVS medication, they are trying to figure out how to deal with the emotional and physical trauma they have endured. Raven hopes that by sharing their story, others with CVS will be able to hear from at least one other person who has lived through something similar.
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