Are you struggling to understand how to live with a hidden disability? Do you feel as though this has harmed your relationships? Do you know how to find the right support? In this blog post, we will discuss some of the ways a brain injury can affect the behaviour of survivors and the impact this can have on the people closest to them. Understanding the aftereffects, and knowing how to seek support, can relieve some of the pressure. It’s all about making the journey a bit brighter for everyone involved!
What do changes in behaviour look like?
- Obsessing or hyper-focusing on things.
- Struggling to adapt to new routines.
- Resistance towards new experiences or ways of thinking.
- Being impulsive or seeking immediate gratification.
- Reacting inappropriately in certain situations.
- Loss of interest/emotion or becoming withdrawn.
- Lethargy, fatigue and low motivation.
Advice for partners, family and friends:
It's not always easy to know how to support someone who is experiencing these traits, especially if they are not aware of them themselves (we’ll speak more about that later.) It can also be frustrating or upsetting to witness someone you care about be affected go through some of these changes.
The best thing you can do is try to remain calm and show empathy. Remember that they have experienced something traumatic, so be patient as they try to move forward. If you have a concern, try to approach the situation with a positive outlook and remain calm. Give simple and clear feedback to help them understand how they can move forward.
Avoid using confrontational language such as "What were you thinking?" or "You always do this" as this can heighten emotions, increase frustration or leave them feeling misunderstood and confused.
Advice for brain injury survivors:
Most of us would like to believe that we understand ourselves better than anybody else. Only we know how we feel, what we want, and what we need, right? When you’re trying your best to adapt to the new ‘you’ and process your thoughts, feelings and emotions, receiving feedback can be difficult.
“Somebody would say something like “Oh you seem more quiet, you seem a little bit more withdrawn, or you seem a little more snappy than you used to” and I’d think no I’m not! Really? Then trying to accept that someone is saying that to you is also really, really tough. So that certainly caused me to be more defensive and I'd think “that’s not me, I haven’t changed!” That just pushed me to try and get back to how things were before which just triggered a spiral of fatigue.” ~ Mark
The thing is, the people closest to you can pick up on subtle changes in our behaviour, even ones we might not see ourselves. After all, they can see the way that we act or react to situations first-hand.
They may try to help by giving advice or checking in with you. Whilst the intention is good, it’s a lot to take in. It’s easier said than done but try to keep an open mind and avoid being defensive. Remember that people tend to have your best interests at heart and any concern is coming from a place of care.
Awareness (or lack of it)
Something that can put a strain on relationships is a lack of awareness and acknowledgement. A quote that really resonated with us is “I didn’t understand what I didn’t understand.”
If you’re not aware of how a brain injury can affect you, it’s hard to comprehend the challenges or changes that you’re experiencing. It goes both ways too, if you’re caring for someone with a brain injury understanding what they are going through can make things easier for you to adapt. You could find reassurance in knowing that these changes are caused by the aftereffects of living with a hidden disability.
Signs of lack of awareness in a survivor could be:
- Frustration if someone doesn’t drop what they are doing to help them.
- Feeling as though the world and everything is against them
- Don’t appreciate the support people are giving them.
- Difficulties understanding other people’s point of view.
Advice for partners, family and friends:
It’s hard to be empathetic when you are dealing with a lack of awareness. Sometimes survivors may come across as being quite selfish. Supporting someone with a brain injury can be demanding and quite emotional at times. It’s not nice to feel that the effort that you're putting in is unappreciated.
You may also find that they close themselves off or start withdrawing from social situations. It’s tricky to know how best to approach this and you may feel a sense of rejection. It’s important to reflect on the reasons why this behaviour is happening. Certain situations may be overstimulating or triggering for the survivor. They also may be struggling with feelings of anxiety or depression, so try to provide them with a bit of gentle encouragement.
Witnessing the person, you care for change can be a difficult process. You may grieve the dynamic of your old relationship, or life so give yourself time to adapt and come to terms with this too.
Advice for brain injury survivors:
Becoming aware of all these issues can be overwhelming. You may feel as though you are letting people down or causing problems. Dealing with feelings of guilt, shame or frustration can have a big impact on your wellbeing and it’s easy for negative thoughts to spiral.
“I still get withdrawn. I still avoid things. I still miss the point and completely misunderstand things so it’s not something that’s and easy fix and there’s lots of ups and downs on this journey. Having that support group and understanding from other people who are saying ‘yes I’ve gone through this as well’ makes it a little more normal and acceptable I suppose. It’s hard to find a word for it but I guess it’s easier to move forward.” ~ Mark
From our experience, joining a support group was life-changing. You can talk to people who have experienced similar things to you as you, and access advice and support from experts. Do some research and see if you can find a local group that you could attend. Another option is to look for online peer-to-peer support services, like our Private Facebook Group!
Finding the right support
To move forward, you need to be honest with yourself and others about how you are feeling and what help you need. Setting boundaries and communicating openly is essential for both survivors and families, friends and partners.
If you’re a survivor struggling with fatigue, feeling overwhelmed or finding it hard to function, don’t push yourself too hard. It’s okay to say no to doing something if it doesn't feel right in the moment. It may not be convenient, but most people will understand and move on.
As a carer, you also have to set boundaries and understand your limits. Think about the support you need to relieve some of the pressure from you.
“If you’re running yourself into the ground physically and emotionally, you’re not really going to be any use to that person. So really do look after yourself and your own needs. And equally if you’re the survivor, we just ask for a little bit of understanding that your loved ones really care about you and want to help, but sometimes we just need a little bit of space. The caring for you can sometimes be 24 hours a day and its straining, it’s debilitating, and we do need that little bit of time to look after ourselves so we can look after you” ~ Jules