I read an eloquent description of how kids with disabilities learn to be suspicious of optimistic teachers. It’s about a pattern where teachers think they can make a kid’s disability disappear or become irrelevant thanks to their teaching. When it becomes clear that it isn’t happening, the teacher will not be so friendly anymore due to frustration and disappointment.
This pattern, where somebody in a position of power expects their actions to somehow rescue a person they’re supposed to help in some way, is something I’ve experienced a lot as a patient within the healthcare system. Mostly with doctors but also with psychologists, physiotherapists and occupational therapists. It goes something like this:
- I see a doctor for one of my illnesses/disabilities.
- The doctor explains to me that their treatment will make me a lot less ill and way less disabled.
- The treatment makes some symptoms better but I still need a lot of accommodations in life in general and when we meet and my life is still limited and permeated by illness. (Or, the treatment makes everything worse.)
- The doctor becomes frustrated and angry with me and send me to someone else.
- I feel like a hopeless case.
That was the short version. What really goes on is something more like this:
Content Warning: Ableism and abuse.
- I see a doctor who is a specialist in a facility that was kind of hard to get to, with a couple of referral letters and a screening process that made sure I really needed this kind of doctor with very advanced skills.
- We spend a couple of hours assessing what my health issues are really about. I answer questions, the doctor makes me do different kinds of test, take blood samples, measure my body in different ways and I try to really explain the complexity of my symptoms and how they affect me.
- The doctor declares that she/he/they can only deal with one illness and the symptoms that are affected by my other illnesses and disabilities are not their responsibility.
- I explain that it won’t work in reality.
- The doctor convinces me that their treatment is so outstanding that it doesn’t matter that I have other illnesses and disabilities, they’re sure this will really help me. Their treatment will make me less disabled.
- I give in to the pressure because I fear that they will see me as lazy and irrationally worried.
- The treatment works on some specific symptoms but it doesn’t make me all healthy and without disabilities. Or, it doesn’t work, it may actually just make things worse.
- The doctor gets frustrated when I still ask for accommodations for my disabilities when we meet. The treatment helped but it becomes obvious that it didn’t save me from my very limited life.
- The doctor punishes me by yelling at me or just sending me to someone else.
- The pattern is repeated with a new doctor.
- I feel like a hopeless case. I feel like there is nobody, not a single person within the healthcare system that will ever be able to grasp the complexity of my illnesses and disabilities and that I’m a horrible person for needing so much accommodation.
Expecting to be a hero can hurt people. In my case, it has made my PTSD and ME worse. Please don’t do this.