Having a brain injury is distressing enough. But feeling like you have to prove its existence to a so called expert, is soul destroying. Too many of us have felt we aren’t being listened to. 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.
15 replies on “You’re an expert on brain injury? Well I’m the expert on mine.”
I feel so sad that you have been dismissed. I believe the person should be at the center of all care, and what they tell you needs to be acknowledged. I acknowledge that you haven’t been listened to and I can hear your frustration.
I love that one. Liar? I think I get pigeon-holed in with whatever type of aBI group my mum has sought expertise. So, drugs and alcohol. Where the funding is…..go figure! Love your work! Cheers,H
Bless your mum for trying so hard
Reading magazines or books help, with memory retention recall, of what you just had read. I like when I re-read something on accident, and go, “wait I remember reading this, or seeing that shortcut direction in the road, which is what everyone does while driving or walking, or riding a bike, you get to know the ideal routes to take. And with the QUICKEST results.email me and I have been tasting in writing a bio pertaining to The TBI I got back on 81101, very detailed. rickyd227 gmail
I think I was very lucky to have first been evaluated by a neuropsych doc who was both expert and compassionate, and he was not hired by an insurer or as part of an “independent” review…made such a difference. In the 4 years of litigation, however, that ensued, I have tried not to become too jaded by watching my character and the reputations of several specials be defamed by the efforts of a system determined to avoid paying out benefits. I know my truth. Thanks, Michelle, for a great post that touches a reality that too many of us face.
There are some fantastic professionals who really do care about people. They need to be celebrated, and know they are appreciated.
So right, Michelle…they can be invaluable
They run the gamut, our professionals, just as our own thoughts do. I had a physician for 28 years who kept telling me, “You have a good heart.” He was referring both to the organ, and to my personhood. I’ve undergone several one-shot psychiatric consults; one doctor sat with me for 2.5 hours and wrote a 10-page report so thorough and validating that I wept to read it. The latest consult was with a doctor who asked me, “Was your brain injury…self-diagnosed?” Her contempt was sickening …
I’m sorry the last doctor let you down. As you had met other who showed such compassion, that must have hurt even more.
At seven months since my injury, I have been shuttled around to different doctors as directed by insurers. One of the most frustrating was the quickie neurological exam of pushing and pulling against hands and following a pencil with my eyes. Oh you’re fine, I heard as I sat across the large desk. Should I have had to recite the growing list of things I could no longer do? Doesn’t seem to matter, they check you off and send you on your way. Thankful for my physical therapy team who help keep me focused on what I can do. One day at a time, of course I have to check my calendar to figure out what day it is 🙂 I am told by those close to me that slowly my sarcasm is returning – they are happy, the doctors, not so much. Trying to stay focused on what I can do and be nice to myself. Michelle your words are the best!
I wonder how these doctors would feel if it happened to them? I realise that neuroscience is still in its infancy, but if they don’t know they should just say. Instead we get packed off because they don’t want the problem.
So Saddened you were “Blown Off” by Supposed MD. I had a Neurosurgeon in Tallahassee that Never Believed a Word I Said! Excruciating headaches, Lost All Memory for 6 mos to a Year. In 1985, there were no “TBIs”. Sense of Smell and Music brought back a lot, but there are holes and gaps that may never fill in. Know Quite a Lot about how You Must Feel! Thank You for All the Wonderful Memes! They’re Spot On!
I’m thankful that 30 years on TBI’s are approached with a bit more understanding, although I know that is still too little too late for you.
I woke up from a coma after a car accident destroyed the right hemisphere of my brain. I left the hospital 6 months later terribly disabled both physically and mentally.
However, I decided to take on recovery by myself. I exercised, read and ate healthy.
I beat every doctors diagnosis about myself by recovering completely.
Well done Darryl, that’s great! It’s nice to hear when others have been able to make such a good recovery.