I'd for every specialist who happens to be involved in the care of someone with a head/brain injury to know how it feels from the patient's point of view.
There seems to be alot of confusion and uncertainty with how best to deal with us. Remember that no two injuries are the same, no two's genetics are the same, no two's background are the same, no two's experiences are the same and no two's luck are the same. We're individual cases and may require different treatments and goals, some need more and different treatments, so we have learned that patience is a virtue in recovery and we hope that you're also patient with us.
When we have the opportunity to visit a specialist, it is a blessing, to finally see someone who knows a little about why we are the way we are. For a moment we hope we can be understood, please understand many of us are frustrated, anxious, depressed, have very complex personalities, can't talk, but make no mistake we all want help. We don't go to visit you to disturb you, to antagonise, to waste your time...no we are desperate for help! You may consider what you do as just a job, but the decisions you in make in maybe 10 or 20 minutes have a massive impact on a brain injured person's and lest we forget their family's life. So please hear us out, give us a chance, be patient and understanding, be sceptical but open-minded, we may have waited a lifetime to get treatment and it's our time to shine.
so true couldn't have said better,looking back i think they did not try hard enough with me,as the consultant said i have patients worse than you i dont dispute that there is allways someone worse of than you,when i left the hospital that day it felt like i had a door slamed shut in my face,never told me about headway ,i dont think they really understand how a head injury has an impact on our lives and its about time they did, i know i am not the worst but it nearly screwed me up completly, take care ,john,xxx
That is one of the battles getting people who think you are fully recovered even to understand your war. I now have a neuropsychologist who has understood that my war isn't over but it has taken ten years to be listened to by the system. Thank you for this piece it has made me realise we are all in this war for no matter how bad our symptoms.
Well said AnthonyM, it's been over twenty years since my TBI - after many years seeking and lost in frustration, I was referred to a consultant neuro-psychiatrist (similar to 'Blix') who has finally understood what kind of 'things' I'm still up against.
Why are there still so many 'qualified' people out there with either a closed mind, too little time/interest, the inability to trust and/or believe or - even worse - these three combined!
Yes well said, I have cared for my son for the last 4 years, and downloaded and read everything I could to understand brain injury. Listening is the key and I do wish carers in hospital listened more, as having practically resided there for 3 months , i realised that in many cases, brain injured people were often left, and not listened to. Lack of funding and time, i guess. Making sure that those close to you know about the condition, as from the experience i had with my son, people are quick to judge you and form negative thoughts.
any body had this said to them, you look ok or you look healthy, maybe we should take acting lessons that way we might get somewhere,if you dont look ill you cant be,when you take your car to the garage and say its not working properly do they say well it looks ok,
Well said indeed, Anthony! When you've had a brain injury, the very last thing you ought to have to do is bang your head against a brick wall......when all you want is to have someone listen and explain.
My "issues" are tiny when compared with most of the folk who post on this site. Mind, I think it might be worth describing my experience of being in the "care" of a consultant who has to stay anonymous....but who I still think of as "Madam Mengele." I pity anyone else who finds him/herself on the receiving end of her insensitivity, incompetence and arrogance.
This is so refreshing to read and realise this is a shared feeling, i tend to isolate myself as i feel no one understands and yet you've put into words how i feel.
I wish i could retain information. organise ones self. be able to make desitions etc coz if i could i would study and become a Neurophyscologist. coz we really need them . There are none in my area.
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