@Flutters’s notes I removed from Wiki post:
Notes:
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I’ll start by saying this topic should probably be a Support Wiki. It’s very important and we talk around it a lot without really dealing with it head on, despite its universal aspects and major impacts. This is similar to, but not the same as the Psychotherapy and Psychiatry support wiki, which is itself a useful and important topic. This is about the emotional impacts of dealing with a chronic illness, including the very necessary grieving process. I apologize in advance for its length. James, I leave to you to decide what to do with it.
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This topic is hard for a lot of us to talk about, easy to dismiss and easy to derail. I would also ask that any comment you provide stay on topic. This is not about the mechanism of MAV/VM/SEH or any of our other possible acronyms. This is not about debating semantics or etiology. This is about the emotional impact of major illness, something we all share, no matter which of the many diagnosis have been applied to us personally. I myself have both a MAV diagnosis and a Vestibular Paroxysmia diagnosis; one is nebulous with respect to cause, the other you can point to on an MRA. So, let’s start by saying we’re all suffering, whatever the cause. I’d be more than happy to read a thoughtful, respectful science-based discussion on the mechanism of this mystery in another wiki, thread or pinned topic item. I think we could argue a basis in the brainstem, neurochemistry, homeostasis, inner ear, metabolic, endocrine and/or a whole lot of things and whether it’s idiopathic, genetic or epigenetic. Just not here. All of us wish medical science knew more about the causes, why some meds work for some of us and not others, how the meds work and how to cure us. That’s not what this thread is for. This thread is for dealing head on with the emotional toll of having a chronic illness.
Added and linked article in Support Wiki, Psychotherapy section.