I've recently had someone negatively judge me for having ABI. They said I have "life easy" as people "understand my recovery", "are there for me in my recovery" and "empathise as I have an "illness to the brain"". This person used my situation to to show that I have life easier unlike her, who has mental health issues and people are unaware how to cope with mental health.
I was stunned. I laughed as well but I was stunned and thought her outlook was rather fairytale.
The irony is mental health is said to occur 1:4 people worldwide everyday. Its so 'popular' (unsure of what other word to use) there is worldwide awareness, campaigns, support etc about mental health.
Unlike with Mental Health, there are no government campaigns, PR, etc about brain injury. There's little understanding or support from members of the public about brain injury.
This person didn't understand a lot of brain injury is invisible too.
I'm new to this and don't know how to change a title, so copied and pasted with a new title. Sorry for the annoyance.
Written by
MedicalAngel
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10 Replies
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Hi
I am a veteran Brain injury survivor(50+ yrs), since finding this forum I have now the confidence to tell folk I suffered a life threatening TBI when I do / say something silly
I also have a Brain Survivor Card from Headway in my bus pass holder ( ring Headway for yours)
To a degree,I can understand your friend's point of view.I think it is the stigma that is still attached to mental health ( yes,I know we live in an enlightened age yet the stigma persists ) whereas a medical diagnosis of ABI has a definitive physical cause and follows a pattern of recovery,albeit of varying time and degree of healing.Yet again,there can be much crossover in symptoms between the two.
I, myself have ultimately been given an FND diagnosis-as the tests I was given did not prove Encephalitis.
There seems to be much confusion between medical staff over the exact meaning of this category ( I do not think of it as a diagnosis,as it seems to encompass such a variety of symptoms )some use it as a convenience when an exact cause cannot be proved,others use it in a psychological manner.
In a way, I suppose I envy those whose neuro event showed immediately on a scan and were able to access the correct treatment as a result.As FND I have found attitudes of dismissal and access to further help denied.
I do not feel that she was negatively judging you, more drawing the comparison of the stigma she endures with the treatment you may expect for a 'real and physical illness' -believe me,some of the attitudes I encountered in hospital from consultants after having a clear scan ( clear scan = all in your head in these days of medical economy ) was nothing short of insulting.
I also understand from the brain injury definitive diagnosis point of view that the treatment,especially follow up can be sadly lacking as can public awareness.Guess both can appear a bit scary to the unfamiliar eye !
A TBI or ABI can be just as serious as Mental health, as the Brain is affected as well, only in some case, nothing is visible. We still know we have a disability, but people have obviously seen us, or knew us, before, so to them, we are ok! Little do they know!
Brain injuries are all different and affect people in different ways. How this person said you have the 'easy' life is beyond me.
I wouldn't say you have the easy life at all, I would say you were very lucky with support etc.
I have been through the wars with my BI and some people, even myself, might think I've got it 'made'.
That is simply not true. I consider myself very lucky to have the support of me folks. If I never had them, I don't know where I would be but one thing for sure though, I wouldn't be living an 'easy’ life.
There is definitely a stigma and a lack of understanding attached to mental health issues, having had clinical depression in the past I'm well used to the 'It's all in your mind (true of course) just pull yourself together (If I could have I would have)' or 'We all get down from time to time (also true) we've just got to dust ourselves off and get on with it (not possible with true clinical depression)' but as soon as you mention to someone "I've got a brain tumour" they go white stumble and struggle to reply until "Oh! I'm SO sorry for you! Is it treatable? I hear they can do wonderful things these days) so from that point of view they are right but dosen't in any way detract or remove the need for awareness of BI and the support we need.
As I've said elsewhere health isn't a competition of who's the worst off. It doesn't matter what you have it's alway's going to be bad for you and you are going to need some form of support, even if it's only anti-biotics for and infection, some of which can be life threatening, including 'real' flu or being wrapped up warm with a cup of tea in bed.
ADDENDUM
Matt you DO have it made! You got that frilly boogie shirt and dancefloor dust up the nose, now not every one has those advantages
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