When we first established this forum, we hoped it would be a community for everyone affected by brain injury, enabling people – many of whom are socially isolated or lacking in support – to come together in a spirit of mutual support.
And that is exactly what it has become: a truly inspiring collective of people providing support, compassion, and understanding to each other – often with a degree of humour.
To everyone who has and continues to contribute to this, we say thank you!
Throughout the past five years, we have maintained a watching brief to safeguard users from inappropriate comments. Thankfully, we have seldom needed to intervene as the community has always done an excellent job self regulating.
However, we do feel we now have to comment on the recent discord that has arisen in some threads.
Some have suggested a need for a separate forum for carers in order that brain injury survivors are not offended by people speaking openly and honestly about the challenges of supporting someone with a brain injury.
While we feel it appropriate to explore available options, like many others in the community we do have concerns that creating a second forum would weaken the community as a whole.
It is disappointing to see tensions developing in many recent threads. There is no place in this community for abuse, unpleasantness towards others, or aggression.
A healthy debate is fine – but please remember to respect each other. After all, the point of this community is to support one another. If you find yourself getting frustrated by a certain thread, we suggest you discontinue to read it. If you find it offensive and believe it breaks house rules, please do report to it us.
This community should never be about carers vs survivors. Indeed, many people whose loved ones are living with a brain injury would not define themselves as carers, rather as parents, partners, husbands or wives. Their feelings matter, and so too do their opinions. Please remember, this is a community for people affected by brain injury – not just those living with the effects.
In order to maintain the spirit of this community, which has done so much good over the past few years, please consider the following:
•Every brain injury is unique, as is every person’s experience.
•Do not judge someone based on your own experiences; theirs may be completely different.
•Supporting someone who has a brain injury can be challenging, but this does not mean you as a reader are ‘a burden’. These are deeply personal, unique experiences of other people.
•Understand that raw emotions can lead people to using powerful and emotive language. Before you respond, should you feel the need to do so, please pause to consider what the person must be experiencing in order to say what they have in their post. Extreme words are often bourn of extreme emotions.
We would also urge all community members to read our community guidelines, entitled Things to consider on Headway's HealthUnlocked community. This includes the requirement to respect other members, to be polite, and to never insult or intimidate.
Finally, please try to think carefully before posting. Everyone in this community is affected by brain injury and became members because they wanted to receive and give support from and to others similarly impacted.
Please let’s not lose sight of the fact that together we are stronger.
With best wishes from the Headway team
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headwayuk
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Providing the reassurance that you are considering options as the community grows and a timely reminder of the things to consider as part of a virtual community.
I try to remember what my dad used to say......"please engage brain before opening mouth".
It is reassuring that the admin staff are taking the "forum fights" or "post wars" seriously. I myself havent seen any carers complaining but that could be because i dont register intrest as i am a surviour than a carer
Please be assured that we do monitor all posts. Our approach has always been that this is a forum run by and for those affected by brain injury. To that end, we try to keep our interventions to a minimum.
I hope that this post will be read by as many of the community as possible and that it will act as a guide to sensitivity, reminding all of the need to treat each other with respect.
I would agree that several recent comments have come very close to breaking community rules, particularly with regard to respecting one another.
We will continue to monitor things closely but we sincerely hope that common sense will prevail and this marks an end to any negativity between members.
It is one of the facets of a Head injury, that people can and do, say things that can be accidentally (or intentionally) hurtful more so than the average person in a debate.
This is a really great forum,with amazing pepole on it.Iam sorry if my "didnot sign up for this stuff"upset anyone.The full extent of my story post B.I is quite a long one!To make it shorter,here goes.My hubby had sufferd from "depression" for five years before we found out what was really wrong.It was hard on both of us,and yes i nearly left him! I have coped with his issues fora long time,but apart from our current lack of sex i now would not change my decsion to stay.We are all individauls but we come together on here for support and a vent! I think B.I is the most life changing illness of all. If hubby hadnot had A.B.I i wouldnot be doing my degree. I would not have such a good realionship with hubby as i do now if he had had "just" depression i would have left. we get on much better and iam vauled by him something that hadnot been happening for a long time,i like the fact that cares and pepole with B.I are on the same forum,it works (most of the time) to read both sides. To know how it is for other B.I suffers has helped us lots. there are enough arguments going in the country lets try and keep it peacefull,spread the joy of life! xxx raz
Dear Headway Team, thank you so much for this post! Would it be possible to add a "box",or mark that in some way whether the post is coming from a "carer" or "survivor"? Like this we will keep everyone here, the discussion will stop (hopefully) and we will have a choice on what we read when we, BOTH sides, feel low. Could that technically be possible to do?
The quick answer is that I don't know. We are looking into how we can prevent such disagreements happening in the future, but we retain the hope that we can avoid a 'them and us' scenario from developing.
Not a problem! We'll look at things very carefully and see what options are available to us. And we always appreciate feedback and ideas from community members.
Personally I find the frequent lack of awareness that online or in person someone is 'Service User', 'Carer' or 'Volunteer' very refreshing. Many of us have a foot in more than one of those definitions at times after all...
I'd be supprised if headway had that level of granular control remember this isn't their site but Healthunlocked.
Possibly silly question but doesn't the topic of the thread tell you what it's about? I'm not sure how having survivors/carers in different colours would help?
Mind you I'm very flat emotionally and have come to terms with the fact that I'm a less nice man than I used to be!
I've just plucked up the courage to reply in open forum.
Thank you for providing the forum and listening to those of us very concerned that things have been so out of balance. I am not sure people quite understand what has gone on - for that I am glad. I should not have to pluck up courage to post here, but know that I have seen some very uncharitable behaviour and words that I believe are unacceptable. It is difficult to act or to challenge in the appropriate way, but we have the responsibility to try. It has been like a 'club' that I have realised I'm not sure I want to be a part of. But we gain strength and humanity by hearing the views of others, and those different to us. Can we all try to look out perhaps for where one lone voice is being shouted down? Use the report button if you feel uncomfortable about how a comment has made you feel? Take courage?
Without rehashing things, can I please ask that we continue to remember to look a bit closer at how we are posting and replying? We carry our burdens as well as we can but I believe we can do this if we put our collective heart into it.
I have been enlightened, amazed, amused, surprised, saddened and supported amongst many other emotions by reading and learning and getting to know how brain injury and life more generally affects us all. I am sad that our less generous human ways are sometimes assumed to be brain injury related when they're human weakness, confusion or fear.
I hope all those I have replied to, or messaged, feel heard, perhaps comforted and their trust can be renewed, hopefully to continue to use and perhaps return to the forum if you have already left.
I may not reply instantly, but anyone can reply to this or message me if they would like.
(I found that suddenly my life appeared to be conducted online, but after coming out of hospital I needed and was being advised to make everything simpler and to stop overloading my brain. All these separate bits of data with each different online service (url, username, password etc etc) I had to develop a cunning system to organise it all!).
Thank you. For me personally it sometimes helps to see the carers point of view (even though I live alone).
And I also know that sometimes I've seen some less than polite language used here ( though I also understand that those of us who have had a brain illness or injury sometimes struggle with emotion which may account for some outbursts too).
Let's hope we can all help support and learn from each other.
I look at this whole event in a completeley different way - I am so sorry everyone I just donot have the energy. It is hard enough to get through my life in one piece without absorbing bad vibes. Fo me this whole episode is sad - yes but on the flipside all the comments comingthrough whatever the position is , for me , an indication that on whatever level, those that have become involved actually do care in their own individual way. I make no judgment on any one. I am in only one skin and that is exclusively mine,so the only person I truly understand is me and I have difficulty with that at times lately (haha).
I truly believe that by far the majority of people who use and contribute to this site bring warmth and support together with a fighting spirit against the range of brain injuries endured. For me this site also offers an extremeley supportive place to come to when we have bad days, both carers and survivors. Long may it continue.
Clare
It took me ages to remember the name of a book that I thought may help woman above. She completely ignored me!
Hello moo196 - it wasn't you! Self-awareness is great - but it's hard sometimes about when/how I respond. I think here especially, oversights and lack of instant response are allowed - we're not all tied to our tech and may have off days/days off. I have rewritten some sentences repeatedly when too exhausted (as you said) and should probably be offline...
Me too. Someone once posted that they 'like likes' but prefer a written response. There were beautiful responses about how, on some days, one click on 'like' is the most we can do and it keeps us in touch - I know I've been in a hospital bed clicking on 'like' when unable to type (or concentrate much).
I thought twice about replying because I have not logged on for a while/regularly , but I am quite surprised and saddened to hear tensions have arisen in our community. I sustained a TBI 6 years ago next month, and certainly in the early years I found solace within this community. Kat and Baron, and others members were and still are a great support to others, and time spent by all contributors reveals we are empathetic and in sometimes the isolating world of BI and BI families/carers, this is a life line to carers and survivors. I think all would agree BI awareness and understanding is limited within the general public, and this is why I feel this forum is important to continue, but not in this manner., I personally feel dividing carers versus BI people could be counterproductive , but this is just my opinion.
Hoping we can move forward in a supportive and respect manner.
Thank you: I had stepped away somewhat as a reaction to some posts; hopefully I can get back to feel supported and hopefully be supportive.
Worded beautifully ❤️ everyone is affected differently on here but but the reason we r here is the same
I have spoken with many people on here and they have offered support as they too understand how hard it can be and many have helped me understand signs and symptoms better!im
Truly grateful for finding this forum and I'm glad I get to see things from
Thank u Headway. I completely agree. If we can give anyone even the smallest bit of help which will in turn help someone affected by brain injury surely it's worth it.
You are most certainly entitled to your point of view on the recent discussions as it reflects how you feel the community should operate.
However, mentioning another community member by name in this manner, and directly criticising that person for being - in your opinion - 'cold and uncaring' is inappropriate and contrary to the guidelines for this forum.
If you have concerns about a specific post, it is important you use the 'Report' button and share your concerns with us directly.
Our rules clearly state 'make sure you’re always polite and don’t insult, intimidate or harass people'. You can disagree with someone, but this message does go too far.
If you feel that another member is being insulted or intimidated, please do alert us to your concerns and we will investigate.
On this occasion, we will leave your post in place as I hope this reply will remind us all that we are here to support each other and need to move past the recent disagreements that risk disrupting the previously positive spirit in the community.
This is an exceptionally difficult issue to balance, so thank you to Headway staff for the gentle reminder, that there are guidelines on maintaining 'a line' between what we're thinking, and how we phrase it.
In the early days after my BI, I blurted a lot, never out of a desire to be judgemental, or offensive, more along the lines of 'first thing that came into my head.' I've tried very hard to re-train myself on that, the majority of my damage is frontal lobe, and there's a fair chance I'd get myself into trouble if I said/typed my 'first impulse', instead of writing it on a bit of paper, and then coming back to it later. I'm a trained Learning Mentor, so years of experience working with adolescents exhibiting challenging behaviours gave me the tool-kit to address my own. (Even when the behaviours I was displaying were more 'toddler' than 'teenager', I honestly am a total nightmare sometimes.)
I tried very hard on here, to be welcoming and supportive, to help where I could, and hold-back when I couldn't. (I don't post when my mood is low, or when I know I'm irritable, recent circumstances have me in the former category, so I've been self-censoring.) The online community has been fantastic in terms of 'Oh, me too!' disclosures and revelations, as we all adapt at our own pace, it has been great to have a 'place' where some of the challenges can be shared openly. (Facebook would send out the men in white coats for some of the things I struggle with.)
I personally don't think that segregating survivors and carers would help, and it would be virtually impossible to stop threads on one topic going off on tangents, so the 'title' flagging the nature of the post can often end up being unintentionally misleading; human nature, we start on one thing, and diverge into others. We are 'in it together', my son isn't my carer, but he is perplexed and frustrated by some of my 'adaptations'.
Always an advocate for cohesion, for sharing where appropriate, but also for being cautious and considerate. We are here to build each other up, not pull each other down, I consciously withdraw when I'm having an 'off' day, and always give consideration to the possibility that others could be having 'off' days when they post. Some of us are blurty, and lots of us have irritability or anger issues. I stick by the ground-rules of one of the training courses I did at work: "Reasonable, proportionate and necessary." Please don't fight, forum-members, there's enough tension and hostility in the world already, without 'us' turning on each other.
I have been helped immeasurably by this board and its conversations. I was in a rollover car accident last August and have had three brain operations. I feel really awful at times and I didn't know if I was going backwards or moving forwards. Reading of the experiences of others in this group has given me tremendous peace of mind as I realize it's a long road to recovery from my experience. Thanks to everyone for being so open in there discussions of their experience. It has helped me and I'm sure it has helped others. I look forward to our continuing conversations.
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