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How having an acquired brain injury has affected me

Meningitis Now Believe & Achieve B&A Media Wall - Erin Jess Ollie - tile block

Three young people benefiting from our Believe & Achieve programme tell us how living with an acquired brain injury (ABI) following meningitis has affected them.

Meningitis Now - B&A Believe & Achieve - ABI after meningitis

“I had bacterial meningitis when I was 8 years old, and it left me with an acquired brain injury.

"Acquired brain injuries are different for everyone, so everyone will have different after-effects or difficulties. For me, the parts of my brain that control emotions, fatigue and sensory processing have been affected the most. My coordination and balance were also affected.

“My emotional wellbeing has been a bit of an emotional rollercoaster since I was ill. After I was ill, I experienced a lot of anger and I couldn’t control my emotions. I would get so upset or angry over the smallest things which caused tension at home and caused issues at school. When I went back to school after being ill, I was so fatigued and burnt out that I couldn’t keep up with other people and I would get so mad at myself. Because I found school so draining and anxiety-inducing, I would bottle up my emotions throughout the day and then have an emotional outburst of tears and anger when I got out of school and went home.

“In Year 6 I was extremely anxious, so I went to CAMHS and had therapy to try and ‘fix’ my anxiety. The therapy worked for a few sessions but when my first CAMHS worker left, my progress stopped and I was discharged because "CAMHS don’t usually treat people with your level of anxiety" (as you’ll read, it didn’t stay that way). I found myself being less fatigued when SATS were over, so I had more energy throughout the day. I was getting over my physical after-effects like poorer balance and fatigue, but I was still left with the emotional and sensory after-effects.

“From Year 7 onwards, my mental health is the only after-effect that people would be likely to notice. Over time I have become less fatigued, even though it is still something that I struggle with. I have been to CAMHS for the second time and have spent roughly two and a half years for the whole process since my initial referral.

“It is hard to tell how much of an impact my ABI has had on my mental health after adolescence however. I am learning to understand the neurological reasons for my behaviours and thought processes and the influence that my ABI has had.”

Meningitis Now - B&A Believe & Achieve - ABI after meningitis

“I am different, weird, unique, and it feels great! I’m proud and you should be too.

“When I was nearly 2, I had meningitis. Meningitis, as I have found, is a serious disease that could happen to anyone, at any age. The impacts can vary from nothing to problems like acquired brain injury, amputations and more. But having meningitis doesn’t make us up. We are all unique and have a story to share.

“I have an acquired brain injury, which can be hard at times. I forget things quite a lot and miss out on friendships because I don’t understand situations all the time. I get quite anxious sometimes, and feel very on edge. My safe places are home, with my boyfriend and at my nan’s. ABIs affect people in different ways at different times but there is help at the different stages too and it doesn’t make up who you are.

“School is hard. Teachers sometimes forget about my problems and sit me at the back or give me long pieces of instructions to do. This can get tricky and also the classroom can get too much for me, which is why my exit card comes in handy. My exit card helps me leave a classroom and go to pastoral support if I’m struggling.

“It’s helpful to write down my thoughts and worries so I can look back on them and reflect. I like to write because I love sharing my story and helping others.

“Believe & Achieve events have helped me find friends and people I can relate to. I’ve learnt how to deal with different situations and get advice.”

Jess is currently writing a book about having an acquired brain injury and how that affects her confidence, her daily life and her time at school. She said it’s “about a girl who suffered from meningitis when she was 18 months old, leaving her with hearing loss and acquired brain injury. But that won’t stop her from doing what she loves most.”

Meningitis Now - B&A Believe & Achieve - ABI after meningitis

When Ollie was at secondary school, he didn’t want to stand out, but it was around 14 that he became aware that things were different for him.

He kept his hair a little longer so that he could hide his scar, he was aware that he was more fatigued than classmates and that he struggled to concentrate for longer periods of time. Ollie was displaying the impact of his acquired brain injury from having pneumococcal meningitis at 4 months old.

He describes himself as being a closed book when he was 14. He didn’t want to answer questions about his after-effects and his experience. He would try his best at school but knew that at times he was struggling. Fatigue could become overwhelming and he found himself frustrated and wanted to stop trying his best within the classroom, but he didn’t.

What helped him grow in confidence was speaking to his parents and having a good group of close friends that he trusted and was comfortable around. He would ask them for feedback on his work and also chat to them about his life. Practical things helped too, like teachers knowing about his ABI, breaking down work, including essays, into manageable pieces. Ollie tried lots of coping strategies and describes it as a trial-and-error process to find what worked best for him.

Sport is Ollie’s biggest passion and within the last year he has graduated from University with a Sport and PE Degree. He talks on his personal Instagram about the benefits of sport and how it helped him throughout his schooling life. He also talks about his meningitis experience on his ‘Meningitis Matters’ Instagram page.

Ollie is now a Teaching Assistant. He works to manage his fatigue and is aware of explaining things to the students he works with. He talks freely about his meningitis experience, raising awareness about ABIs, attending events and he has his hair cut shorter now. His hairdresser was someone who he went to school with who didn’t know about his scar until the day she cut his hair. Even then Ollie was able to share his experiences with her.

Ollie is a peer mentor within Believe & Achieve. He supports 14 to 25-year-olds one-to-one and at events through his confidence, empathy, passion and his smile.

“I decided to become a peer mentor for Meningitis Now's Believe & Achieve programme due to wanting to help people and share my story and journey with others. I hope to inspire people to achieve what they want in their lives. At times, I have found stuff difficult with university, but I have found ways to overcome these challenges both by myself and with the support of others. I also find sport to be a good reliever of worries I have now or have had in the past.”