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How to regain your identity if you have post-concussion syndrome

If you have post-concussion syndrome then you may feel that you’ve lost your identity. This happened to me after I sustained a concussion in a car crash in 2016. I went on to develop classic textbook symptoms of post-concussion syndrome, including almost constant headaches, dizziness, brain fog, emotional dysregulation and balance problems. I went from being what I considered to be a ‘normal’ person – in my case, a healthy, busy, full-time mum of three children; pretty capable, organized and enjoying life - to someone who felt almost constantly anxious, lacking in confidence and unable to walk very far or drive.

I felt like I’d become a different person. I just couldn't seem to get back to being who I’d been and I didn't like many of the new things about me. I was acutely aware of all my shortcomings, especially my speech problems and slower thinking. I worried about how I came across to friends and in social situations. I was also constantly in pain and often felt down and like I wanted to retreat from the world. As I had no obvious physical injuries, my behaviour so often must have come across to others as awkward and odd. People couldn’t see the dilemmas and struggles I was facing on the inside. I mourned the loss of the other person I'd been and who I wanted to be again.

Gradually, with hard work and help from a counsellor and neuropsychologist, I began to piece back together who I was and I also recreated certain aspects of myself. I’d like to share with you some of the things I learned during my recovery about reclaiming identity after a concussion. It’s easy to fall into despair and hopelessness but I want to encourage you that you can feel confident in who you are again.

Like me, you may feel like you've become a different person after your concussion. You might not like this other person, or parts of them, very much. For example, this new person may irritate or embarrass you, let you down or surprise you by what they do or say. However, rather than hating them, feeling ashamed of them or wanting to hide them, it's really important to care about them, show them love and look after them. Try to accept and befriend all the new aspects of yourself. It’s important, too, not to judge yourself. For example, if you believe yourself to be failing in some way – for example, not behaving as expected or coming across in a way you’re not happy about - remind yourself that at that moment in time, you are doing the best you can. Praise yourself for your efforts and reassure yourself that you will learn from the experience and next time you will try better but know that you did your best in that instance. Speak to yourself with kind encouraging words rather than being self-critical and talking to yourself harshly.

Be aware that you are not your concussion and you are not your pain or any other symptom that you have. The same goes for emotional issues. You may feel them or experience them but they are not you. You may find yourself saying things like, “I’m depressed” or “I’m anxious” but you are not those things. You may feel them or experience them, but they are not you. Pay attention to your language and how you talk about yourself. It may seem like a small nuance but it's better to say, “I feel depressed” or “I feel anxious” because then you are not identifying yourself directly with the symptom. Try it and see what happens.

Do absolutely everything you can to put yourself first as you recover. This can be hard to do as so often we want to do things for others, be helpful and put others first. However, self-care is not just important, but critical, for recovery. It's not being selfish. It's giving yourself the best chance of getting better and going on to be able to be the best version of yourself that you're able to be. So, be OK with saying ‘No’ to doing things you know are beyond your current limitations, spend time looking after yourself and make healthy life choices. When it comes to social situations, be honest with people and explain that you’re struggling. If they’re sympathetic and accommodating, great. If not, no worries, choose to spend your time with people who are.

You are still essentially ‘you’ after your injury. Your essence – what makes you essentially you – is still there. Personally, several years post injury, I still have problems sometimes with issues such as word finding or my memory not being as good as I’d like it to be or struggling to stay on track in a conversation. So, in that sense I’ve changed but I’m still fundamentally me and I now generally treat those things as minor annoyances or funny quirks. If something is really proving to be a challenge, then I determine to work on it to improve in that particular area.

As well as loving yourself unconditionally, flaws and all, practising self-care and being kind to yourself, believe that you're going to get better and that you're going to improve and that you're not going to stay exactly as you are. You are not stuck with the identity you currently find yourself with forever – you can and will change. You're going to evolve. Humans don't stay static. We never do.

If there are any aspects of your post-concussion identity that you really are struggling to accept, then reassure yourself you can work on those to create lasting change. Although your injury wasn’t in your plans for your life, tell yourself that in the situation you now find yourself in, you have the opportunity to work on and develop yourself as a person. There’s a vast number of books, videos, online courses and other resources on personal development available, many of which are free or inexpensive. So, accept how things are for now while also acknowledging this as an opportunity to do some self-development work.

The human brain is incredible and more powerful than we often give it credit for being. Neuroplasticity – the brain’s ability to change - is amazing. The brain creates new connections between neurons all the time. This is influenced by things like our experiences, choices, habits and learning. We can create new ‘super highways’ in our brains – thick networks or bundles of neural connections - depending on what we focus our attention, efforts and time on. Over time, we can change how we do things and how we act. We can intentionally do certain things to create the desired changes. The more we do something, the more of it we are able to do. Think of a person learning to master a skill, such as a gymnast. They may just start as a young child being able to do a forward roll but over years of dedication and practice, they become a masterful athlete, able to carry out the most intricate and complex moves such as backward somersaults on a beam or backflips and twists on the uneven bars. That may seem very far removed from your life right now, but the point is that change and progression are possible due to the brain’s neuroplastic nature, even if it has been injured.

I've come to appreciate who I am and I'm fortunate to have a supportive husband and children and some good friends who have supported me over the last few years. I’ve been able to move forwards and build momentum as I’ve seen progress in my recovery. For example, although I struggled to read, write or watch a film earlier on in my recovery, which was really upsetting for me, I was gradually able to build those skills up again and that opened up more and more possibilities for me. I started to write again, then I began to journal and then I started writing short posts on social media and from there I was able to write a blog article and now I do this regularly. It still requires more effort than it used to pre-injury but I’m now up to a speed and ability level I’m happy with. Over the last couple of years, I’ve taken various online courses on topics I’m interested in, with a view to using them in a work context. When I look back over the last few years, I can see how far I’ve come from those earlier difficult days when I thought I’d never be able to do any of those things again.

Start taking steps today towards being the person you want to be in the future. If you need help getting unstuck from where you are then consider working with a counsellor, coach, neuropsychologist or therapist, preferably with experience of working with people with brain injuries. Stay strong and motivated. Keep moving forwards, keep trying new things and keep rewiring your brain. Do and draw on all the things that you love, that you’re passionate about and that make you who you are. Reach into your memory to reflect on times in the past and events and memories that are meaningful to you. Tune into the emotions that you want to experience. Whatever is important to you, do more of those things. Keep building those neural connections and you will change and you will look back and be amazed at where you’ve come from and what you’ve achieved.

Don’t underestimate the inner characteristics you have that you can draw on, such as determination, endurance, grit, positivity and resilience. Dig really deep and lean on those qualities when you feel despairing, exhausted, hopeless or scared. Tell yourself that you can do this and keep going, even when you feel engulfed by the pain, brain fog, fatigue or other symptoms. I always found that fatigue was one of the worst triggers of symptoms, so learn to listen to what your brain and body are telling you and rest or change activity if you need to.

Living with post-concussion syndrome isn’t easy so frequently tell yourself how brave you are and make a point of acknowledging your achievements and even celebrating them in some way sometimes. Brain injury survivors are some of the bravest, most admirable, tenacious people I've ever come across. There are online communities and groups of concussion and brain injury survivors as well as those that meet up in person, some of which you may be aware of or a part of. Being in such a group and connecting with others going through similar experiences can help you to feel less alone and regain your confidence.

Your experience gives you a different perspective on life and you will be able to use that to encourage, help and support other people. I’ve had the privilege of connecting with lots of people with post-concussion syndrome. I feel that we’ve been able to support one another and share what we’ve gone through. I also have a better understanding now of neurodiversity and issues that people struggle with such as dyslexia, ADHD or anxiety. Experiencing a life-changing condition like post-concussion syndrome can make you more empathic to others with the same or similar health conditions. Also, if as a result of your injury, you’ve experienced secondary challenges such as financial difficulties or rejection from people who don’t understand you, then you may find that you are better able to understand and be a support to people facing similar challenges.

It’s no small thing to have to deal with the symptoms and knock-on effects of post concussion syndrome. Understandably, it can affect how you see yourself and relate to others and the world around you. Your circumstances do not have to be a life sentence, though, and there’s a lot you have control over regarding shaping your identity and working to move forwards from where you now find yourself. Muster up all the creativity, determination, motivation and strength you have and use that to stay hopeful and drive yourself forwards and make the changes to your identity that you want to. At the same time, be kind and patient with yourself and give yourself plenty of grace along the way.

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