Why do you come on this site?: I've been coming on... - Headway


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Why do you come on this site?


I've been coming on this site for the past 2 months now, I feel i'm drawn to it by some underlying power, which I can only describe as a feeling of comradeship with others who've experienced the same setbacks as I have, I'd like help but I've come to realise that we're not all the same and have different reasons for coming here. Some people i'd say are slightly naive about their injury and want more information, others maybe weren't injured as severely as others and are a bit ignorant about the experiences others have, some don't like the idea of associating themselves with disabled people, others just want a stage to shout on or to flaunt their lives. I don't feel as though this is a community of like-minded people anymore, although maybe it never was.

40 Replies

What made you say that AnthonyM? I always like your posts by the way. I do agree with the flaunting themselves and wanting a stage, but only in one particular instance. Apart from that I do think this is a great community. I have not had a brain injury myself, my mum (Cat3) and my dad, who is completely disabled and unable to speak both have had a SAH in the past 15 months, therefore I shouldn't really fit in on here but when I have posted or asked a question everyone has been helpful and supportive and I know my mum gets a lot of benefit from using this site. I have learned so much about people's different experiences and really do feel this is a community.

I think this site is a complete godsend. If you are brain injured or supporting someone who is then I think whatever you have to say is valid and meaningful. We are all on our own personal journey and the opportunity to share that experience and be understood without being judged has been invaluable.

I'm not sure I've seen any flaunting, but maybe you're talking about me?

I certainly don't mean you Dorsetcharlie xx take care xx

I think the site is a great resource...I have learned a lot both about shared and about very different experiences. I love that there is a mix of survivors and supporters/loved ones and the range of perspectives that brings.

We are all different... we were different before our lives were affected by brain injury and we may react differently to what life has dealt us....so while we will have some shared aspects we will not necessarily be like-minded ... but this board gives us the opportunity to make contact with people who understand and with whom we can share to the benefit of all concerned.

I am glad it is here...I come on to the site to read what is happening and to consider the questions that are raised. I love having the chance to celebrate small triumphs that I might never have heard of otherwise.

i come here for a variety of reasons, one reason is so that i know i am not alone

on the other hand i have been fortunate enough to have gone through many different types of therapy and hope that maybe i can share something that will help someone else

equally i read a lot of things that i am going through and it helps normalise these traits i have and ground me a bit. or alleviate some worrying.

and i actually feel good when someone says that i have provided some help or good advice it gives me a sense of worth.

there have been some posts i have found that i feel are not appropriate for this site, and they tend to be the non head injury related ones, i like the fact that headway moderate it so posts stay on topic as we could easily be washed away in posts that have no relevance to brain injury and dilute the content, which makes it harder to find the helpful information (but these are few) so its not a big issue yet but it could easily be

if it turned into a chatroom where lots of posts were general banter then i wouldn't come here. i have facebook for general chat and stuff.

some posts i cant relate too, and find it hard to get my head around, and others i can see myself in.

i find reading hard, so i really hope headway keeps this group relevant to brain injury, so it doesn't become a chore reading it

the one thing is that once you are new here and share your worries or questions, you run out of things to say, without repeating yourself

i now tend to offer advice where i can. so maybe it becomes a bit stagnant and we hear the same thing

and then opening up fully to a group of strangers is also a hard thing

so i don't really have a major specific reason for coming here, but i have set my browser to open it when i open my browser as i would ask or reply and forget to come back.

Anthony - you post really made me sit back and think! We are all entitled to our opinion but maybe this site is more for severe cases of head trauma and not for people who have been thro a life changing brain operation - haemorrhage, but been left with no major problems that I am thankful about every day! Coming on here helps me understand the new me and the invisible changes in how my brain now computes things but maybe as yourself and biker mentions - I may be insulting you, I'm sorry is that's the case, will think maybe I should stop coming I here?


cat3 in reply to Jigsaw

Don't you dare go anywhere, Linda, you would be so missed. cat xx

Jigsaw in reply to cat3

Bless you cat, thank you. Linda xx

same here don't go anywhere, we all are here to help each other and shared our stories and support each other

Thank you Biker, reading your posts again, I think my cufuddled brain got the meaning wrong, you always say interesting things that are put so well. Anthony's comment made me think that maybe something like a SAH that leave no visible problems may not seem worthwhile talking about? would never want to undermine what you have been through.

Take care, Linda x

i must admit that i never really thought about the differences between a trauma and brain operation, i just assume they are the same because they affect us, and i guess its the luck of the draw as to the effects we have, but i dont see a divide, more a common problem/issues

i hope my post didnt come across as being horrible, i hope i didnt sound like i was being horrible or anything, my main concern is that i would like this place to be more of a support group than chat room

so if i have sounded mean i do apologise

I don't think you were being mean at all. People are responding to the original post as they have interpreted it and you responded from your perspective, which, after all, is what this site is all about!

I think you make a really good point about avoiding it becoming a non specific chat room.

Alicedenham in reply to Jigsaw

Linda your SAH was less than two years ago and like me. I still have lots of questions to ask. I know I ask naive questions and continually look for answers. Anthony, you have had 12 years experience getting to know your brain i am still getting used who I have become. I love talking to people who are at different stages of recovery. The fact that you can get honest answers without feeling intimated is something I treasure. Linda I like talking to you and hearing your stories and I know you are somebody who will listen and understand. Don't stop contributing Alice xxx

Jigsaw in reply to Alicedenham

Alice, I met you thro this site and you have made such a difference in my life which I will always be grateful for, big hugs, Linda

Alicedenham in reply to Jigsaw

After 110 miles you might think differently! Probably time we told the community?

Jigsaw in reply to Alicedenham

Alice - sorry only just saw your comment - yes I think we should! x

No Linda. Please don't do that! It is absolutely not for anyone else to judge how severe your brain injury needs to be to contribute to / gain insight and support from this site.

The Headway mission is "To promote understanding of ALL ASPECTS of brain injury and to provide information, support and services to people with a brain injury, their families and carers.". That includes you!

Jigsaw in reply to Dorsetcharlie

Thank you Charlie, big hugs to you and jake, Linda xx

Anthony - I am glad that you feel comradeship with the people who post here, so do I!

You are right that the people who come to the site have all had different experiences and are looking to get different things out of their posts. Maybe it is a good thing that this is not just "a community of like-minded people" There is often great benefit in getting reactions from people with very different views and backgrounds and experiences.

To answer your question I post here because I wish there had been a site like this 6 years ago when my family were plunged into the black hole of a brain injury. I thank God that brain injurys are rare but that does mean that when it happens to you or someone you love then you are not likely to know anyone who has been through a comparable experience. This is where this site works so well because you can get a reaction from people who really can come somewhere close to understanding how you feel.

Sometimes we might be able to give practical advice. But I think that it is just as important to give support and show people that others have come through the immediate trama into a life that is different but that still has good times as well as bad, much as it did before.

Personally I find your posts and those from others who also had a brain injury some time ago (bikerlifestyle being a prime example) really helpful because they show how my son (who is the one with the injury) might see things further down the line.

Please keep up your input when you feel it is appropriate - there are people who read and respect what you have to say because you are one of (thankfully) relatively few people who knows what living with a brain injury is really like.

God bless

Hidden in reply to davesdad

I completely agree with comment

davesdad in reply to Hidden

Thanks - and a BIG welcome back!

Hidden in reply to davesdad

No prob, thanks..it's short term, then it'll b summer for update, then off until winter & back for update, then off until..............

You are right, Anthony, this has never been a community of like minded people. It is a collection of folk from many different walks of life with possibly only one thing in common.....head injury. That might range from severe head trauma resulting in lasting, devastating consequences to a haemorrhage or stroke or injury which,as in my case, leaves the person with limited disabilities. In the latter case. peoples lives have been affected to a lesser degree but,for them, it has changed their lives forever....with exhaustion, poor mobility, headaches, short term memory loss, depression, and more. That doesn't mean they have less to contribute to each other or people worse off than they are. The carers,of course,go without saying.....with lives of dedicated, selflessness who come for support and advice also.

There has, in the past, been an isolated case of serious digression but that has ceased now.

I come here for reassurance and comradeship and to offer support wherever I can.

There are some intelligent members on this site who don't need to actually BE in other's shoes to sympathise and offer useful advice. I like you Anthony and I know you have serious issues but I'm surprised by your comments......I wouldn't ever have expected this from you.....I have to confess it's really disappointed me.

i am confused now, i think i haven't understood the post, as everyone seems to have read it different to the way i did,

Hidden in reply to bikerlifestyle

Nah mate, it just your age...haha (only kiddin)

bikerlifestyle in reply to Hidden

welcome back mate :)

Hidden in reply to bikerlifestyle

Yo, troubles back :)

Lubilu01 in reply to Hidden

Oh monkey, we missed you. That made me laugh xx

Hidden in reply to Lubilu01

I'm on for a short while, then disappearing again..then I'll b back again, then disappeaing again.

Lubilu01 in reply to Hidden

Are you teasing us!? X

Hidden in reply to Lubilu01

No. If I make friends at work, they'll discover the brain injury & leave me (like all the others have), so in order to keep a low down is to be a bit-part of this site.

I totally got what you said Biker, you put it really well, as always x

Going back to the first post ,i do think being able to share the views and experiences of other families is a great help, and thats the reason why many of us log on , read and share the stories and views from the people on this site.

Thats my own view on the reason why i come on this site , it was highly recommended and has helped us understand some of issues that we have faced.

When your not sure whats going to happen to your loved one , or if you need a answer to a question thats on your mind , this site is like a life line to many of us as theres always somebody on hand to help.

Being able to put down in words is also a way of sharing a life changing experience , as some thing praying on your mind, that can be shared is a release of pressure that builds up for me any way.

The future is uncertain for how people recover from thier injury or contition, but hearing the views of how others were able to cope,means we have a insight of things that may come along.

If i came across a family or person who had found them selves in a similar situation , i would nt hesitate to pass on this valuable site , in the hope they would be able to get support , help and advise like we have .

You are braver than me for even posing a question on here. I have not even gone outside my door on my own. I spend all of my days inside alone. I often ask myself the question you have posted, so, hope you do think I am irrelevant, as I do think of myself. Each day when my partner and 7 year old son leave for work and school each morning. I check in here as I feel this is a place where possibly my past life experience or my memory and knowledge maybe of help to others, as my scale of recovery increases.

Similar to other posts, I feel that although we may have different reasons for being here, we all have our own part to play.

As we are all at different stages of recovery and need a connection with someone outside family and doctors and just a general subjective perspective rather than a text book analysis of whats happening - well thats my reason and I hope this is not too flaunty for you.

I am always inspired by your questions and thank you for this and wish you a happy easter and everyone else on here x

Hi to all of you!

I have just come on to this site, and really wish I'd found it 13 years ago when I had my head injury! It would have gone some way to alleviating my sense of isolation I'm sure.

I'm currently doing a Masters course in psychology and education, and am researching the experiences of people with a non-apparent disability as part of my thesis. It was a hard slog getting to where I am now, and I have to work a lot harder at my studies than most other people on my course, but if this study gets at least some recognition of the unique struggles and intense joys that we experience then it's all worth it.

I would greatly appreciate anyone to come forward and share their experiences with me. If you want to, please let me know and we can maybe exchange email addresses and I can inform you of all the ethical procedures involved and stuff.

Thank you for taking the time to read this!

Hidden in reply to research

Hi, welcome to the site! Your story is eerily similar to mine in some respects, I had my injury in 2000, I've gone through education achieved great results but struggled to get there. The results don't really describe the effort and sacrifice I made to get there. We all have unique traits even if the injury is to the same part, I've just read James Cracknells story who had a frontal injury like me, there are some things I see in myself but others definately not, like he became talkative afterwards when shy before, in my case I was shy before and talking became harder after the injury, so it just highlights we're all individuals. I've already shared quite a bit on my experiences on this site, if you'd like to know more PM me.

i first came on to see if i could gatther info as to a cure for my many thing that were broken

an my head

there is no cure for us as i eventualy found out

the brain is you in all aspects

it will fix its self to the best of its ability

so now i come on as i like to see and here progretion in others

besides ive had all i can take from talking to myself all the time

my world is like being harf deaf blind an trippin on musshies all the time

help me ha ha ha ha ha

is not all bad at all

its the real world that is rubbish

and i dont even buy drugs

my brain does it for freeeeeeeeeeeee

im rammblin again arnt i

oh well never mind


com an live in my house

we can all have a giggle

I look forward to our replies Leeleeleelee

Lubilu01 in reply to Lubilu01

I meant your replies, flipping predictive spelling, I hate it!


I come on here to feel that can be myself amongst others who understand, like in a similar boat kinda thing. It helps me escape this isolation. I only signed up to this yesterday.

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