27 Feb Recovering from brain injury
Recovering from a brain injury is a difficult process. Brain injuries can cause many different symptoms – you might experience changes in your cognition, emotions, senses, or motor function. There’s no ‘quick fix’ or ‘one size fits all’ approach to recovery, and everyone will experience it differently.
Brianna Ellem spoke to us about her experience with a brain injury caused by complications of Chiari malformation. She highlighted the impact that brain injury can have on your mental health, and the resources and supports she found helpful in recovery.
Brianna’s story is just one example of how you can support yourself or a loved one after a brain injury. Thank you Brianna for sharing your story and helping to raise awareness.
Brain Foundation: Can you tell us a bit about your experience with brain injury?
Brianna Ellem: In 2015 I started to get really bad head pain. I’ve always lived with brain disorders (Chiari malformation, which also caused absence epilepsy) but this was different. My Chiari was getting worse and my brain was pressing against my skull, causing a brain injury. I had an operation in 2016 to try to treat the injury, but I’m still living with complications since the surgery.
For the next two years I was angry, frustrated and depressed. Whenever I spoke to doctors, I felt like I was constantly repeating myself which made me feel crazy. It’s been a long journey of recovery ever since.
BF: How did this impact your life?
BE: After the injury, my life changed significantly. Some of my friends were accepting and supportive, but some were not. It was really hard to lose these relationships with people I thought I could rely on.
I’m now living with all sorts of symptoms that I didn’t experience beforehand. My internal ‘thermostat’ is broken, which means I get headaches from changes in temperature or air pressure. I’ve also experienced cognitive changes which make everyday tasks much more tiring than they used to be. I find it hard to motivate myself and stay on task, and I get distracted quite easily. Early starts are particularly difficult, which is frustrating if I need to do something in the morning.
I also need more time to process things. If someone asks me to do something, it’s best if they let me know as early as possible and communicate really clearly. Simple things like going to the shops aren’t so simple anymore – I need to plan ahead because these tasks take up a lot of my energy and concentration.
Thankfully I have found ways to manage these changes. I have gone from surviving to thriving, and I’ve been able to get back into the workplace and social situations again.
BF: What did you find helpful in your recovery?
BE: So many things! In general, it helps to focus on stability, routine, and basic healthy living principles. This includes eating a healthy diet with lots of fruits and veggies. I eat my meals slowly and drink lots of water.
I use some strategies specifically to manage my symptoms. For example, I use caps, hats, beanies, heat packs and ice packs to help with my temperature regulation and sensitivity to air pressure. This helps me avoid headaches. I also use noise-reducing earplugs so that I don’t get overwhelmed by an information/sensory overload when I go out.
Some strategies have been more helpful for my emotional health, particularly talking to a therapist. Exercising and spending time in nature has helped me a lot. I’ll usually go for bushwalks or go to the beach to relax. Socialising is really important too – I love spending time with friends and family.
Learning more about Chiari malformation has been really important as well. Even though I’ve had my fair share of bad experiences with doctors, I now have the support of medical professionals and support workers who I trust. I’ve spoken to a neurosurgeon at Macquarie University about Chiari, and have had the support of occupational therapists, neuropsychologists, and support workers. I’ve also joined Chiari help pages and support groups on Facebook, which are great. I’ve learnt to be kind to myself and have reframed my thinking about my disability.
BF: What advice would you give to someone living with a brain injury?
BE: Remember that knowledge is power. Even doctors can get things wrong, so don’t always go with the first diagnosis. Talk to other people with similar experiences and get second opinions when you can. If something doesn’t feel right, speak up and advocate for yourself when you’re speaking to doctors. This goes for support workers and the NDIS as well – don’t be afraid to change providers! If you’re incompatible with a worker or a support provider, it’s best to switch.
Advocating for yourself is important in your personal life as well. Be clear about your limits and focus on what you can do, and communicate that to the people in your life. Try to ditch the guilt and be firm with your boundaries – learning to say ‘no’ is hard, but it’s necessary. At the same time, don’t be afraid to accept help when you need it.
It can be tricky at first to find a balance between when you need independence and when you need support. Sometimes people have tried to micromanage me because they think it’s helpful, when really I would have preferred to do things for myself. But other times, they’ve asked for too much from me. I know it’s frustrating, but if you keep advocating for yourself, this balance will get easier.
I also want to emphasise how important this is for the workplace. In my experience I have found workplaces to be approachable if you are transparent. You don’t have to disclose your condition to every staff member, as this can affect how they see you – some coworkers are really good and supportive, others are not. Some staff might see you as less capable.
My advice is to be confident in yourself and trust yourself. It’s not easy because you feel less confident after a brain injury, but you can still do what anybody else can do. We are just seeing and experiencing things in a more amplified way, so it might take more time for us but we are not less than anyone else in the workplace. Check in with your mental health on a regular basis and recognise the signs of when you need a time out, before it becomes a massive meltdown.
A few other practical tips:
- Be aware of pain medication (I find caffeine helps a lot with headaches)
- Manage your days and find a routine that works for you
- Therapy animals can help for some people (my dog, Chewie, is a great source of support for me!)
It can be tricky at first to find a balance between when you need independence and when you need support … I know it’s frustrating, but if you keep advocating for yourself, this balance will get easier.
BF: What advice would you give to someone who is supporting someone living with a brain injury, such as their family and friends?
BE: Everyone living with a brain injury will have a different experience, but I’ve really appreciated when people in my life have given me the time and space to process things on my own. Being supportive doesn’t mean you’re talking about brain injury and asking questions the entire time, it’s enough just to be there for them.
Obviously there are some differences. I need more time to process conversations, so it’s helpful when people focus on what’s relevant rather than telling me everything at once. Respect the person’s boundaries and listen to what they need (which hopefully you do with your loved ones already!).
At the end of the day, you can support someone living with a brain injury the same way you do with any other person. Hugs, interaction, and an understanding partner are great sources of support. Just someone saying ‘everything’s going to be okay’ and letting you know they’ve got your back means so much.
Further resources & support
Thank you Brianna for sharing your story and helping to raise awareness for brain injury, and the significant impacts it can have on a person’s life. Your insight into the process of recovering from brain injury is something that will help many people.
Here are some other links and resources related to this interview:
- Epilepsy – overview article
- Chiari malformation – overview article
- Other patient stories
- Share your story – fill out this form if you are interested in sharing your story