Before I had my brain injury, I didn’t have a problem dealing with medical people. If I didn’t like what they were saying, or I didn’t like what they were telling me, or the treatment they were giving me, I felt that I had the choice to do something about it.
After my injury, for at least two years, I had no control over anything. I didn’t know what to say, and I felt that quite often I wasn’t listened to.
I always make sure I take my support person to appointments when I can in order to make any sense of what they’re saying; he translates for me and does it very well. He’ll summarise for me and ask the questions again.
Some of the medical professionals will talk to my carer and not me. And it’s actually about me. If my carer needs to back me up and clarify something that’s fine, but it’s so rude to direct their questions at them. You lose confidence in your ability, at a time when you should be actually building up your abilities.
‘Patchy’ would be the word to describe the experience. You have some really good people and then some people who really have no clue, no idea how to deal with people with disabilities. Often a medical person will pose a question and I say ‘Can you tell me a bit more about that?’ and they just say the same thing. They have no idea how to rephrase the question or break it down.
If I could do anything about the relationship with the medical profession it would be giving them some help with answering questions in a way that makes sense.