after receiving my TBI and spending time in several hospitals and rehabilitation, there was a period of time when I felt really positive about the world and especially people. It wasn’t until many years later I read that this is a normal experience following brain injury.
I don’t know how long it lasted but it was replaced with clinical depression.
when first receiving counselling, all I could do was sob continually and blurt out that I didn’t know who I was anymore.
This counselling was with a mental health nurse who’s main goal seemed to deter me from seeing a psychiatrist. The explanation was that once that happened I would be given medication and labelled as someone with depression which was a negative thing. Not to me it wasn’t.
I needed more help.
I eventually started a long journey with frequent psychiatrist appointments. Much more sobbing and several attempts at finding a medication that helped enough without turning me into a zombie.
This continued for many years together with psychologists appointments for talking therapy.
it gradually helped to changing degrees.
At some point a Consultant had a eureka moment and said he would change my diagnosis to adjustment disorder, as I wasn’t able to cope with the difficulty I was having day to day -
He was chuffed with his idea, which of course made absolutely no difference to my struggles whatsoever.
So that was twice that I had been told by health professionals that a diagnosis of depression was a bad thing for you due to what others would think.
what others? Did it include them too?
Then about 10 years ago , I did not receive a letter that needed replying to and my regular appointments suddenly stopped.
Unable to figure out how to proceed I just stopped taking my medication and gradually went very much downhill, becoming extremely difficult and even violent.
This came to a head and I was put back on medication.
things settled again and years have passed once more.
My point is that even with the right medication we live with the cloud of mental illness hanging over us, even from those whose job is to treat us.
We have to manage it from within.
Ride out the bad times and be patient from them to pass.
They will return. It’s a cycle like the weather !
A brain injury is an injury and mental health issues that result from it are our symptoms.
It’s mainly the interactions with other people during the bad spells that make it so difficult.
I think .
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Steveau
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Hi Steve, have you ever been referred to a neuropsychologist or a neuropsychiatrist. Many of the symptoms we experience are similar to those who experienced other mental health issues, the treatment is often identical, but the causation is very different in that it all stems from a brain injury. The issues we live with need to account for this. The neuro people address the issue with the brain injury, whereas the generic mental health people ignore the brain injury.
In my previous incarnation I was a psychic nurse, and with the hindsight of my own brain hiccup, I can say that generic psychiatry isn't great when it comes to brain injury.
Depression is a common consequence of brain injury, therefore this needs to be addressed as a consequence, not as a common depression, it is a reactive depression that can be due to the physical impact of the brain injury, i.e. the brain may not be able to produce or absorb the chemical messages as they would if undamaged. Also following a brain injury there can be other hormonal changes that mimic mental health symptoms. The neuro team is aware of this.
It’s all a long time back. Possibly a bit of both. Probably the more appropriate one very early on, and then later maybe not so.
I feel that I’ve learnt how to deal with myself ( not necessarily cope) .
When I’ve had help the advice always feels temporary, as you go home and you’re by yourself at the bad moments trying to push through to find a balanced place where things are manageable and you feel some level of self control and peace.
This is probably what I need right now. Other people to communicate with who are in the club.
Outside of others who have a brain injury there’s no conversation that’s really valuable to be had, in my experience anyway.
People are hard wired by nature to avoid people that behaviour/ are odd. And that’s true for even your closest.
Yes I know what you are saying, as time has passed the so called bff's do fade away, as does any remnants of practical support, but we live in hope........
Hi Steveau, I know exactly what you mean. There are endless posts on here about the deep depression we all endure, so it's clearly a symptom of brain injury. But like so much else of our condition, the medical community don't seem to understand that or know how to help us.
When I was released from hospital 2 years ago I was absolutely suicidal. I had lost everything about myself that mattered to me and my existence was unbearable. I decided to hold off until my kid finished A levels as I couldn't put them through the extra struggle. And during the wait, my GP finally got me on antidepressants, which have taken the edge off.
What I would suggest to everyone is, if you can manage it, find yourself a private therapist. The NHS keeps dismissing me from every system because I'm too weird/complicated/boring for them. Nothing is consistent or constant, so no useful help. My private therapist is always there, once a week, and we've formed a great bond. She's not an expert in brain injury at all, but keeps educating herself and has come up with some fantastic ideas.
Another useful thing I heard in a podcast was that what we experience when we emerge into this new version of ourselves isn't depression, but really grief. Grief and shock over everything we've lost. Grief that our former self has died, and our new self has to process this. So probably, grief counselling would be helpful.
I'm still not happy. I wouldn't call what I have now a life, it's just an existence. But I'm finding things that make me smile, like long walks in nature. I'm going to try painting today, and I'm looking forward to that.
Therapy, yes, we all need it. Long-term, persistent therapy to help us through this painful journey.
that’s really struck me. Yes it is grieving. I don’t think I’ve heard that before.
Not only grieving for what you’ve lost but for me , I think I grieve for the lost opportunities that have resulted from the injury particularly with what I can cope with with regards working.
Over the last 20 years I have had recurring thoughts of suicide.
When I say recurring I mean it’s constantly there. It was a real scary thing for a long time that I always played down when speaking to a professional. Because…. Again I think if you speak too freely it felt like I would be categorised, or stigmatised. I feel like the only time suicide is dealt with is when someone has a failed attempt.
Over time I stopped seeing suicide as an answer to stop all the suffering that I couldn’t master.
Instead I started seeing those feelings as a safety blanket.
I started to see them as a the most relevant trigger to make an immediate action to change what I was doing at the exact moment the thoughts were intruding.
Difficult to explain. Weird to be able to use recurring suicidal thoughts to improve/ manage myself.
I could never speak like this about these things.
It feels so good to sit here and type out these things knowing that those that reading them are likely to understand to a large extent what I have to say without judgement or panicking about me.
This truly is the best therapy I’ve ever had.
Feel very emotional. But that’s good this morning. A good emotional outpouring not a destructive one.
This feels like a new place. An online community of like (damaged) minded hope.
Oh, yes, fantastic advice, thank you! Lost opportunities are not an area I had considered, but yup, those need to be processed too. All my long-term career goals are gone, as well as other things like my next karate belt, some planned long bike rides.
I love your idea of looking at suicidal thoughts as a trigger response, then looking at what needs adjusting in my immediate situation. I've been more gloomy than usual this past week, and saw my therapist yesterday. I don't remember what we talked about (my memory doesn't work anymore), but the key message from her was that I was obviously exhausted and needed to take a break from thinking for a bit. My brain clearly needed to hear that because I've collapsed into a mental and physical heap of exhaustion, and will be relaxing with my painting for a couple of days.
You're absolutely right about what great therapy this group is!
Quick note though... I shouted out to every medical person I saw about my suicidal thoughts, and little or nothing happened. I was referred to the mental health folk. But the report they issued said nothing about my suicidal thoughts, it was full of positive notes about how well I was doing. I reported them to the care quality commission. I called Samaritans too, they were so useless I hung up.
Yup, agreement on all levels. Thank you for having this fantastic conversation with me. I really needed it, and you've given me some new answers/ideas to stumble on forward with. Big hugs to you my funny club mate!
I use 'alerts' to find conversations I'm involved in. No chance of finding anything else.
I do think quite a few of us would love to get together. The opportunity to chat to other brainless folk without having to put on the very heavy "talk normally" mask would be wonderful. And hearing useful tips and insights. You can definitely count me in!
Is the post you're struggling to track down the one where I suggested we try to organise a meet-up? That was a conversation you were having with someone else. Not sure how I found it. But you gave your location, so I chimed in that we're not too far from each other.
Oh my heart is so sad for you. My son suffered TBI and I can so relate to your feelings. I see him suffering from depression and he’s always so sad now. He lost his marriage, his home, his daughter and numerous jobs since his accident as he is not the same person as before. He was declared bankrupt last year and still has hmrc hounding him, on a regular basis. It’s so hard to see him go through such a traumatic injury and then to see his life fall apart too. Sending you hugs to help you get through your painful journey. Life is a bitch sometimes x
my tbi apparently is so severe that am incapable of depression, grief( loss of parents/ carers) basically am emotionally numb?! Glad so after reading so many experiences here!! Am the same, with bro. Went to see doctor/ councillor & spoke crap! Nice day! Lovely coffee! Anything but the reason for me being there!! Brain injury’s are sure a challenge, even took part in a research study on them several years back. Taught me to use my memory in many useful ways. Helped me to relearn social skills.?!! Still reluctant to make new friends, scared I will alienate them with my apparent improper/ insulting waffle?!! Read what my sister wrote about me in a DWP form several years back. Omg!!! Am not that bad!! …. But then again? sMILE to spite the realisation!! Life goes on!!
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