social media Archives - Jumbledbrain

Why you’re wrong if you brand a brain injury survivor as toxic

Michelle #jumbledbrain — Thu, 20 May 2021 16:15:29 +0000

Social media is full of ideas and there are a lot of people who try to remind others to look after themselves. That is an important message as we can’t pour from an empty cup, i.e. if we have used up all our energy and not replenished it we have nothing else to give. I think we all can appreciate this sentiment. But what I get more concerned about is when I see people throw around words which have become the latest trend to use that encourage people to brand others as something rather than try to understand them. The word I’m particularly concerned about is toxic.

How easy it is for the brain injury survivor to be unfairly labelled as toxic.

I know one former friend stopped talking to me because she “needed to surround herself with uplifting people who reflect her kind of energy.” This happened within the first year of my recovery process. If you have been following me for a while you will know that I was also grieving the death of my mum and trying to help my dad cope as he declined with Alzheimer’s. I fully admit that I wasn’t much fun at that point in my life and I probably didn’t offer much support with what she was facing at the time as my plate was already over flowing with trauma. Maybe I talked too much about how I felt my life had fallen apart and burdened her too much with it all. This wasn’t someone I saw a lot of so it’s not like she had to hear it every week, and I guess we just weren’t as close as I thought. Honestly I’m fine with us going on our different paths, that’s just life. But what I don’t relish, is the realisation that what she was actually doing was branding me as a form of toxic.

What is a “toxic” person and why a survivor shouldn’t wear this label.

It appears that there are a few different behaviours which are being called toxic. I want to run through them and explain how a survivor may well behave like this at times but why it’s just ignorant to brand them as toxic.

THE CONVERSATIONAL NARCISSIST – Someone who talks about themselves a lot, rarely asks the other person any questions, appearing that they are more interested in themselves and what is going on their life at that time.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – When you have gone through a major trauma your body and brain go into “fight or flight mode”. You might find that you’re more jumpy than you were before as your system is on constant alert for danger. But also you’re brain is trying to analyse what you have been through, unpicking all the little details in hope that it an find a way it put it right again and keep you safe from it happening again. This is a behaviour I have no doubt that I displayed a lot with my former friend without realising it. I can tell you that this doesn’t mean that I didn’t care about her, just that I thought as we were friends she would be willing to help me through all the thoughts and emotions I was being bombarded with at the time.

THE EMOTIONAL VAMPIRE – Someone who will find a negative angle in most situations. They are often sad and pessimistic which can take the wind out of the other persons sails.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Whilst we are still processing the trauma we have been through our brain will continue to look for signs of “danger” in any given situation. It is looking to avoid any more drama, disappointment or heartache as well as physical danger. This is another behaviour I know I was guilty of with my former friend. She had just become an Arbonne consultant which she was doing whilst continuing with her very successful career in another area. I listened to the sales pitch she gave me about why I should sign up as a consultant which the lady who’d signed my friend up chipping in on too. I was worried about investing in something that was designed to make others rich and explained how I thought this was a pyramid scheme. Actually, it’s a multi-level marketing (MLM) business. The only difference between a MLM and a pyramid scheme is an MLM has an actually product to sell. However, they both rely on each new level recruiting new consultants. The higher levels take a percentage of the sales from every consultant they have recruited, so the higher up you are the more money you make. But those at the bottom of the pile often just invest money buying the products and may never make money. So yes, I did rain on her party and she probably didn’t like to way I did it in front of this other lady. But when you are still in “fight or flight mode” from your brain injury it can only be expected that like a cornered animal you will either look for a way out, or will bare your teeth.

THE FIBBER – Someone who regularly embellishes, exaggerates or just claims things that just aren’t true. This is seen as being wrapped up in their own self importance, attention seeking and dishonest.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Often brain injury survivors can confabulate, which is where the brain can try to fill in the gaps in our memory with things that didn’t happen or aren’t accurate. (You can read more about these in Confabulation is not lying. False memories due to brain injury.) We genuinely believe these confabulations, so whilst our brains are lying to us, we are not being dishonest when we relay them to other people. We think they are real and the truth. Yes this might be a little wearing for others to try to unpick what is accurate, but we don’t mean to cause any harm.

THE CONTROL FREAK – They have lots of rules to follow for different situations, such as the environment you meet in (lighting, background noise etc.) Plus when they disagree with you about something they won’t stop trying to convince you that they are right.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Many of the rules a brain injury survivor is trying to impose on a situation, are actually their coping mechanisms. They may suffer with noise and light sensitivity and these rules help them to manage their fatigue and avoid additional pain. I have been that party pooper who has begged someone to turn the music down which wasn’t even loud. There can be just a particular vibration or pitch that just overloads the injured brain of a survivor. Think about it, if a wheelchair used said they could only meet somewhere with that’s wheelchair accessible you wouldn’t think they were being controlling, just asking you to make choices which means they can safely join in.

If we disagree with you and won’t let it go, that could be us struggling with our slow processing. Sometimes with the damaged pathways it can take us long to take something in and analyse it properly. That might mean we keep pushing back because it doesn’t sound right to us. We might eventually agree with you once the brain has mulled on it for a while, or we might still not agree with you. A brain injury doesn’t mean we’re stupid or that you know better than us. It could be just that on that occasion you’re wrong and we’re trying to do you a favour. We might have lost the filter that would kick in and tell us to accept that you’re never going to agree and so change the subject. Yes that can make the situation uncomfortable, but in most cases in time we can regain this skill so don’t write us off.

THE DRAMA MAGNET – They are always complaining that something is wrong. Offering advice doesn’t help, and the moment one crisis has been resolved, another comes along.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Again this comes back to the trauma a brain injury survivor has been through. Many of the things they are conveying are because their life has been turned upside down. Often it has cost them their career as well as their health, and unfortunately a loss of income effects virtually everything. When in this situation it’s difficult to look ahead and plan so you’re stuck in this moment, scared of what is coming next. Just like it’s not helpful to tell someone with a chronic illness to “just try going vegan”, without understanding their condition, unprofessional advice might not be supportive. We’re not always looking for you to resolve it for us. Talking about our worries can help us process the emotions and we might privately find a way later which is in part thanks to you offering a non-judgemental ear.

Please be careful when using these terms to brand someone as a bad person.

You might not be able to cope with the behaviour that a brain injury survivor has started to display as a result of their injury, and of course your mental health is just as important. If that’s the case I agree that you need to back away until you are in a position to deal with them in a healthy way, or that they have recovered a little more. But please don’t throw around terms like toxic as it’s unhelpful to brand people like this. A brain injury is a disability, but with the right support we still have a lot to offer and shouldn’t be discriminated against.

As a brain injury survivor have you ever been branded as toxic? What do you wish people understood about why you do the things that you do?

The post Why you’re wrong if you brand a brain injury survivor as toxic appeared first on Jumbledbrain.

When raising awareness becomes TBI victim blaming

Michelle #jumbledbrain — Tue, 27 Apr 2021 14:48:32 +0000

There is still a lot of misunderstanding about traumatic brain injury and the long term effects. One area which is starting to be better appreciated is concussions in sports. In a number of sports it has become protocol to take a player off the field the moment a concussion is suspected to minimise the damage and maximise recovery. This is an important culture charge and I hope that improvements in attitudes and treatments continues in this vain. Thankfully, I have yet to see people blame a sports person for a TBI they sustained whilst competing in a sport. It seems to be accepted, and rightly so, that these injuries are an unfortunate accident that the sporting authorities need to do everything within their power to try to prevent. When a TBI does happen to a player they must get the support they need and everyone else needs to analyse if there is anything that can be done differently to minimise the risk of it happening again.

However, the same can’t always the said for other causes of a TBI.

As someone who sustained a severe brain injury in a car accident, I always find I feel I need to clarify that the accident wasn’t my fault. Part of me assumed that this was my own hidden prejudice and/or ego that lead me to do this. But on national alcohol screening day, (I think this only happens in America, it’s certainly not a thing here in the UK) a prominent Not-for-profit put out a post on social media which validated my need to defend myself.

We already struggle with people under estimating how our invisible disability effects we, especially since we can have days when we APPEAR to be doing well. This can lead people to think that we play up to it or use it as an excuse when it suits us. The last thing we need is for them to be given another reason to withhold compassion.

I’m not going to name the Not-for-profit involved as I have no doubt that they do important work for many survivors and I do not want them to be trolled for this oversight. I already told them how their wording made it sound like TBI survivors caused their own circumstances, although I’m not sure they quite accepted that they could have worded it better.

“30% – 50% people treated for TBI who were under the influence of alcohol at the time of injury” is what they chose to post, with no other context. Firstly, if we get past the bad grammar and badly constructed sentence, they appear to be saying that a lot of us were drunk when we sustained our brain injury. They give no indication as to where they get their figures from. I’m confident that not everyone who sustains a TBI is screened for alcohol, this would only be relevant for drivers if the police are looking to see if they need to prosecute for driving under the influence. Anyone who had an accident at home, for example, wouldn’t need to be screened for alcohol. Even those who were assaulted whilst out drinking this post represents unfairly. They are the victim, but by focusing on their alcohol consumption makes it sound like they got what they deserved. Only after I challenged them for victim shaming did they clarify that they were referring to driving under the influence, but anyone who was just scrolling through their social media feed probably wouldn’t have seen this.

When you are acting as an authority on your subject you have an increased responsibility to be clear and accurate.

This organisation wants to do what they can the prevent brain injuries wherever possible, and I support that wholeheartedly. Drink driving is a very dangerous thing to do and too many lives are lost or forever changed as a result of it. Therefore, anything that we can do to convince people not to do it, the better. Particularly since it’s not just the individual who is at risk. Both passengers, other motorists and pedestrians are put in grave danger every time someone gets behind the wheel after consuming alcohol. This is why this badly worded post upsets me so much. They are many brain injury survivors who sustained their life changing injury as a result of SOMEONE ELSE’S drink driving. They are the victim, but this post could make people assume it was their fault through the perceived choice to drive whilst under the influence. We already struggle with people who underestimate haw our invisible disability effects us. They can accuse us of “playing up to it” or using it as an excuse “when it suits us”. This kind of badly thought out post can give people just another reason to condone showing us a compassionless attitude.

I want to implore anyone who is working as an authority on brain injury to double check any posts they put out like this. Double, triple check it. Ask someone else what they take from the post and what they think it is trying to say. It’s not uncommon for us to not realise that, without context, people can read our message differently from how we intended it. Make sure you are helping to raise understanding as well as awareness, and not adding to the discrimination and misunderstanding we feel everyday.

Do you think organisations need to be careful on social media to avoid posting updates which don’t serve our brain injury community?

The post When raising awareness becomes TBI victim blaming appeared first on Jumbledbrain.

Why Pinterest is great for brain injury survivors.

Michelle #jumbledbrain — Thu, 06 Jul 2017 12:42:46 +0000

As I have now shared over well over 100 articles about my brain injury journey, there is something I have noticed about the survivors community. As we all go through the terrifying confusion of what has happened to us, we activity search for information. That could be to gain an understanding of what is happening to us, suggestions on what helps, or to just know you’re not the only one. In Not alone after Brain Injury, I mentioned how social media can offer much needed support. But as I use Pinterest more now, I have come to understand what a major role it plays in this too.

The most beautiful search engine.

“Google it” has become a well used phrase. Recognised as meaning to search the internet for the answer as it is the most popular search engine. It is a fantastic resource, and has put answers at our fingertips. But as I explained in Aphasia from brain injury, it becomes more difficult when you don’t know what to type in.

In steps Pinterest! Like Google it ranks it’s articles, but it does this based on their popularity. (Amongst other things.) But unlike Google, you don’t always have to type in something to find things of interest. Of course you can if you want to, but there is another way.

Like Facebook you can follow individuals or groups boards. This then populates your main feed with their activity. As everyone can categorise their pins (as articles are known on Pinterest) you can choose which of their categories you do or don’t see. Or you can search through their boards to see what they’ve pinned previously. No struggling with thinking of the right word, or it’s spelling. You can just scroll though the pins, which like magazine covers, are pictures with a hint as to their content.

How I’m using Pinterest to help others.

As being able to read about others experiences of brain injury helps the community, I have started a group board for brain injury bloggers. They can pin their gems to the board, so in time it will become a “one stop shop” for survivors stories. It helps them find their audience, and you find inspiring articles. To check it out just click on the image below and it will take you straight there.

Also there are plenty of other related articles which have been pinned there too. You can then repin anything you want to your own boards. Great for if you have read it and want to be able to refer back to it later. But also this shows Pinterest that the article is popular. This means others who have not found this board, but are searching for keywords that pin contains, are more likely to have it come up. Together we can ensure others who would benefit from these gems, but aren’t in our social networks find them.

If you have a blog that you would like to be able to submit, here’s what you need to do:

Avoid just pinning your whole website. Highlight each article as a pin. It helps to have a particular subject you are talking about in the heading, just like a magazine.
Have a beautiful image. If you are able to customise your images, like I do, it helps catch their eye. Vertical images work best for Pinterest. Canva is great for this, but just make sure your images are your own, or if not, are licensed for reuse. I get mine from Pixabay for this reason. (As I have horizontal images in my blog which work better for Twitter and Facebook you will see I do it a little differently for Pinterest.) Click here for a YouTube video which explains how to do this.
You don’t have to clutter up your article with a vertical image by hiding it. Click here for instructions on how.
Follow the group board and send me a request to be a contributor. Then I can send you an invite, and you can start pinning away.

Are you a fan of Pinterest too? Is there anything else you think social media could be doing for you?

The post Why Pinterest is great for brain injury survivors. appeared first on Jumbledbrain.

How a brain injury can make you extra sensitive to hurtful comments

Michelle #jumbledbrain — Thu, 18 May 2017 10:54:25 +0000

As humans we are so diverse and that’s what makes the world so interesting. Imagine how boring the world would be if we were all the same. Whilst we will have some things in common with another person, we still have different strengths and views. But that can lead to us to making some hurtful actions or remarks when we disagree. It doesn’t have to be like that, and often the person doesn’t mean any offence. In my previous post Dodge behaviour related misunderstandings provoked by brain injury. Tips from a survivor , I talked about how others might take offence from our behaviour. So today I thought how it feels when the boot is on the other foot.

We all can say something unkind at times, and usually people just brush it off. But my brain injury makes me more sensitive and less resilient.

Don’t get me wrong, I realise how easy it is to put your foot in it. Recently I was trying to pay a friend a compliment when it backfired. She’d posted on her social media about how she was about to start in a new role she had been promoted to. Knowing her well, and the journey she had been on, I knew what an achievement this was, more than most. There was a time that she seriously considered resigning because she was going through a tough patch. To recognise her determination and tenaciousness, I wrote that she was a true “British Bulldog” for how she turned her situation around.

I thought I was showing her my support, but it was misread as an insult. My friend and many who read my comment, thought I was calling her a “dog”. It’s not a term I would ever use, so it didn’t enter my head that it could be seen as hurtful. Once we talked about it and I explained I took it for granted “Bulldog determination” was a well known saying. Therefore I assumed the good intention would be understood. I was genuinely mortified that they took it the wrong way.

We smoothed it over and moved on, but I’m still reeling from it really. I’ve run over it so many times. I’m angry at myself for making a stupid assumption. And I hate the idea of people I don’t know but she does, thinking I was taking a swipe at her when I meant the opposite.

Sometimes the faceless world of the internet makes hurtful comments stick faster.

As a blogger I am a fan of the wonderful resources and opportunities the internet gives us. But, as with everything, it does have some less admirable elements too. I don’t expect everyone to agree with me if they have kindly taken the time to read my articles. However I’m still surprised now some people react.

I’ve had some people take aim at me for grammar errors. Believe me, I do try to make things easy to read, it’s not that I don’t care. There are times some people pass judgement before reading the article. And that’s their right to do so. When you open up your thoughts in this way, not everyone wants to hear them. (I feel the same way about reality celebrities, although I hope that’s not the way people see me.) But if you don’t want to know what I’m saying, just leave it there. I’m not forcing anyone to read, them. It’s fine to have a different point of view that you want to raise. But don’t just take me down because you need someone to aim at.

I even had a troll for a while.

They say you haven’t made it until you have a troll. This person would send me messages telling me how awful I am, and that no one cares or will help me. They didn’t even explain what I had done to upset them. Each hurtful message was sent more than once to try to ensure I saw them.

I so wanted to retaliate, but I read the best way to deal with them is ignore them. That way like a petulant child they will get bored and look for a new target. My site has filters on it which do a good job of stopping spam and nasty comments making it into my site. I can check them like you can look at your junk email folder, but unless I OK them, they don’t get published. That meant they didn’t get any attention from me or my other readers.

Luckily, it worked and they gave up. But I was left feeling like I’d been on an unfair trial, not knowing the charges or being able to defend myself. But I hate the idea that they got away with it. Typical bully behaviour, being a coward they don’t have to face their victim or any consequences. Worse they are free to subject someone else to their mindless acts. (If you want to learn more about Trolls and how to deal with them, I found How to Deal with Trolls on Social Media useful.)

Putting it to one side doesn’t mean I don’t care, just that I won’t focus on it anymore.

We all have the right to have and express our opinions. I have to toughen up. If I was to take all differences of opinion to heart, it wouldn’t end well for me. When you have a brain injury you have a big enough battle on your hands as it is. So I need to get better at just letting things go.

Do you find you can brush off hurtful comments? Are you better or worse at this since your brain injury?

The post How a brain injury can make you extra sensitive to hurtful comments appeared first on Jumbledbrain.