Having a brain injury is distressing enough. But feeling like you have to prove it’s existence to a so called expert, is soul destroying. Too many of us have felt we aren’t being listened too. When you have gone through all that effort of trying to describe the indescribable, you are stunned that you’re being brushed under the carpet. In Brain injury patient alert, what do you expect? I outlined one example of this happening to me. At that stage I thought it was just me, but now, sadly, I know it’s not.
It’s their job to judge, but if they didn’t know you before, how can they be accurate?
The brain is such a complex subject, and still relatively little is understood about it. So I realise that it’s difficult to be certain of what the problem is. But I think there is too much reliance on brain scans. I, like so many others, had scans which didn’t show the damage. That might have lead to one so-called expert, having a biased view.
The first Neuropsychologist I saw, having read reports about my “normal” scan results, said my struggles were psychological. And I’m sure that after going through a life threatening experience, some of them were. But that doesn’t mean I didn’t also have physical damage to my brain. There was something about that which made me feel he was suggesting that I was mad or just making it up. My lawyers had booked my appointment with him so they could build a case for my compensation. He was supposed to be on my side! If he was questioning my condition, how would everyone else see me?
The cognitive tests he did with me didn’t show up much either. But that was compared to national average statistics, not Michelle on a good day statistics. So at best I was pigeon holed as a bit crazy, at worst, a liar.
If you want to know more about these types of tests A Guide to Neuropsychological Testing from Brainline.org does a pretty good job of outlining them.
We know there isn’t a magic wand someone can wave, but some validation would be nice.
Any “expert” can only begin to imagine what it is like to suffer a brain injury. My world was turned upside down. The worst part was that I couldn’t trust myself anymore. Things I thought I knew , were wrong. It felt like that moment in the film, “The Matrix”, when Keanu Reeves’ character finds out that they live in a simulated reality, and nothing is real. But this is my life, not a movie that 2 hours later you just carry on as normal!
I know they have to detach themselves from it to be impartial, and remain sane. Otherwise it would be too draining getting to close too each case. But we are people, not just humans. At the time I thought my case might have been because, being a legal case, they wanted to be sure I wasn’t overstating my injuries just for the money. But I have heard of too many survivors being dismissed.
The questions in the consultation feel like the Krypton Factor.
Even when they are approaching you with an open mind, half the time you don’t know what they are talking about. For anyone who isn’t medically trained the terminology is baffling, but when you have a brain injury it’s virtually impossible to understand. So when answering their questions you’re never quite sure if you gave them the details they needed, as it’s difficult to see what they are driving at. Therefore they still might not understand the gravity of your situation.
As with all professions, there are some who are good, and those who are not so good. Luckily I went on to see a really helpful Neuropsychologist via the good old NHS. Her tests did prove I had some cognitive issues, and she was very supportive. So just because one expert downplays your condition, don’t give up. Get a second opinion. Sometimes the challenge is finding the right person to understand you.
I do recognise that it’s tough for Doctors to give the right diagnosis, as I explain in Added confusion – why my brain injury was hard to diagnose.
Other articles you might like:
- Inconsiderate people + Brain injury = Awkward situation.
- Understanding how to communicate with brain injury survivors.
- Complacent but not carefree after brain injury.
- Hangry vs brain injury. Let’s avoid the grumpy outcome.
- Master the act of ditching the hurtful but inconsequential things. Battle of brain injury survivor.
What is your experience? What would you think a brain injury expert to do differently?