I offered my services to do patient experience lectures. I did warn that I don’t have a happy ending in the illness they wanted, but I thought my experience was valid because it’s good to know what can go wrong and the beginning of my story is like everyone else’s.
They really wanted someone to talk about how the illness was difficult and not how the care was bad. The illness was difficult because the care was bad. It was implied that because I’ve been through too much that, it was basically too hard for a student to hear and they didn’t want horror stories.
I can kinda get that. In a lecture it makes sense to have a central point and generally end on what is feasible to improve upon. That’s how I’d structure it, a simple central point with my narrative and cited evidence. Like if they wanted me to talk about the day to day struggles of my illness I would focus on that. If I was talking to Family doctors, I’d focus on stuff they could do. etc.
Shouldn’t we also talk about bad care? A big part of my struggle was that I was refused care, or not believed. Is there not a space to talk about how when these things happened it made me feel worthless? That I was scared all the time. By avoiding X, Y, Z you’ll probably give better care? That maybe there are issues that effect both patients and healthcare providers and those need to be fixed?
But of course, I’m never that articulate when on the spot. So I didn’t make those points.
I was told they they also needed good stories. I said there needed to be a balance because good stories remind us what we did right and bad stories are for learning from mistakes.
And that’s when it’s pointed out to me that my experience is so bad, that I must be the only person who has gone through that. That it’s not an average experience, so they didn’t want to take the extreme into consideration.
It made me feel like shit and ashamed for sharing. It put me in such a bad mood I debated calling my therapist (I haven’t seen her in 4 months and I’d only call if I thought I might do something rash) but I managed to calm myself. Thinking about calling her, made me go through all my therapy skills to soothe myself.
It’s always gonna be like that, isn’t it? I’ve been hurt to much, not ‘the average amount’, so my pain is one that has to be thrown away as irrelevant?
What is an adequate amount of suffering?
Are there places where they want to hear about the bad stuff? Or is it always “and then this angel came down and save me” narrative?
Are Patient stories are the meaningless propaganda I always thought they were?
I guess I have to write essays under my real name, and maybe some healthcare provider will read them and say “That’s not gonna be me, I’m gonna be different.” Like Julie Devaney’s My Leaky Body.