Dec 10, 2016
“They’re talking about my brain MRIs and my blood tests and all my clinical symptoms and then just as an aside to me, when something is happening in the discussion, my specialist says ‘Because you tested positive for these antibodies, by the way,’ and this was the first I’d heard of this diagnosis.”
Rhiannon was grateful to receive a diagnosis and for the quality of medical care she is receiving. At the same time, she felt powerless and excluded to learn of her diagnosis in a presentation of her case by her specialist to the immunology team.
“I guess I was expecting… that would change everything, like when I had the diagnosis, I would suddenly be able to start acting and be more focused and positive, and it would be this moment when I could take charge of my illness. And I think, the way I found out, made it really clear that was not in fact going to change anything.”
It wasn’t until she listened back to the story we recorded, that Rhiannon realised how hurt she felt about the experience.
“If you asked me right after I’d told it, before you played it back, I would have said control. I value control… But... I value the feeling that my feelings matter as well.”