When brain injury becomes a part of your life - whether it’s you or a loved one who sustains it - it’s not just a temporary thing, it’s a complete lifestyle shift. Life doesn’t go back to how it was, and yet no two brain injuries are the same, and neither are the hidden disabilities that come with it.
One of the most misunderstood aspects of brain injury is its invisibility. People often think that if you look fine, you must be fine. But behind the smile or the quiet gaze can be a storm of fatigue, sensory overload, cognitive challenges, emotional mood swings, or memory lapses. These “hidden” changes aren’t visible to the outside world, but they can have a huge impact on day-to-day life.
Because every brain is unique, the adjustments needed after an injury are equally personal; there's no one-size-fits-all approach - what works for one person might not work for another. It’s a unique journey to discover what changes are necessary, which environments feel supportive, and how to adapt in a way that empowers healing and wellbeing.
One of the hidden disabilities that comes with Mark’s brain injury is extreme fatigue. Before we recognised this, Mark would often get burnt out as he would push himself beyond his limit. This then resulted in a longer recovery from the fatigue, having to spend entire days resting in bed, which didn’t give him the best quality of life. Once we became aware of this, we had to make some adjustments to our daily lives, to ensure that Mark was well rested and his fatigue was manageable.
For example, we try our best to stick to a regular sleep schedule; that includes going to bed and waking up around the same time every day. This helps to regulate Mark’s body clock and gives him the quality rest that he needs to function. We also carefully plan out our days, so that he can have periods of rest in between busy moments to avoid the dreaded burnout.
We have found that acceptance has been crucial to our journey living with a brain injury. We have had to accept that Mark now struggles or deals with things differently than he did before; and that is okay. ~ Jules
The Journey of Adjustment
One of the most important things to understand is that the process of adjustment after a brain injury isn’t linear. It can take months or years to fully realise how the injury has affected you or your loved one. Sometimes, the changes are subtle and creep in slowly. Other times, they’re dramatic and immediate.
You may find that situations you once handled with ease, like food shopping, meeting with friends, or managing work emails, now feel overwhelming. Or perhaps your memory has changed, or you find it difficult to regulate your emotions in the same way. These changes can be frustrating, and it’s completely natural to grieve the loss of your “old” self or your loved one’s former abilities.
But with that grief comes an opportunity: to get to know this new version of yourself, to advocate for your needs, and to find new strategies that help you live a meaningful life. And most importantly, to embrace that adjusting is not a sign of weakness - it’s a sign of resilience.
How Journaling Can Help
Part of making effective adjustments is understanding exactly where those changes are needed. That’s where journaling becomes a powerful tool. Try to write things down each day: your mood, your thoughts, how your body felt, what worked, and what didn’t. This can help you begin to recognise patterns and aid towards the adjustments you need to make.
For example, you might notice that noise in busy places causes fatigue that lingers for hours. Or that your mood dips significantly on days when your schedule is too full. Over time, journaling helps pinpoint triggers, track emotional responses, and identify which activities support or drain your energy.
Through this reflective process, you begin to create a roadmap for your recovery and adaptation. You become more in tune with your body and mind, more empowered to make the right adjustments, and more confident in communicating your needs to others. As a loved one of someone going through these changes, journaling can really help you to track your loved one’s personality shifts or new-found difficulties, so you can be on hand to support them in whatever way they need.
The “Shining After Brain Injury” Journal
That’s exactly why we created the “Shining After Brain Injury” journal, to help individuals and families navigate the emotional and practical realities of living with a brain injury. It took us a number of years after Mark suffered his brain injury to really understand the impact of the injury and the adjustments we needed to make to best support him.
The journal includes prompts to help you track your mood, note cognitive or physical symptoms, reflect on what you’re grateful for, and write freely about your thoughts. It’s designed to make the invisible visible, not just for your own awareness, but so you can share that understanding with loved ones, therapists, or support workers.
When you can look back over a week or a month and see trends such as low energy after social events, anxiety in certain environments, or clarity in the mornings but fog in the afternoons, you can begin making small, meaningful changes.
Possible Adjustments You May Need to Make
1. Pacing and Rest
Fatigue after brain injury is not like regular tiredness, it can be all-consuming. Learning to pace yourself is crucial. This might mean:
- Taking regular breaks throughout the day.
- Avoiding back-to-back appointments or activities.
- Scheduling high-demand tasks during your “best” time of day.
Use your journal to experiment with pacing strategies and record how they affect you.
2. Sensory Management
Many people become sensitive to noise, light, or crowded environments. Adjustments might include:
- Wearing noise-cancelling headphones in busy spaces.
- Using soft lighting at home.
- Limiting time spent in overstimulating places.
Journaling can help identify which environments affect your symptoms the most.
3. Communication Tools
Brain injuries can affect speech, memory, or the ability to process information quickly. Strategies may include:
- Using written notes or voice memos to keep track of tasks.
- Giving yourself extra time to respond in conversations.
- Asking others to speak slowly or repeat important details.
4. Emotional Changes
Mood swings, anxiety, and depression are common but often hidden struggles after brain injury. Adjustments can include:
- Regular therapy or counselling.
- Creating calming routines.
- Using journaling to release difficult emotions and notice patterns in your mood.
Our Shining After Brain Injury journal includes mood trackers to help with this.
5. Supportive Routines and Structure
Routine can be a lifeline after injury. Consider:
- Creating a consistent daily routine.
- Using visual calendars or alarms as reminders.
- Keeping your environment organised to reduce overwhelm.
Routines provide a sense of control in a world that may suddenly feel unpredictable.
6. Family and Relationship Changes
Families often need to adjust expectations, roles, and communication styles. Open, honest conversations are vital. You may need:
- Family therapy or support groups.
- Scheduled time for connection and understanding.
- Space for individual emotions to be felt and processed.
Encouraging loved ones to use the journal alongside you can help create shared understanding.
Shining Through the Darkness
There will be days when it all feels too hard. When grief, frustration, or fatigue feel like too much. Just remember that it’s okay to struggle sometimes. You’re allowed to feel those things. But you’re also allowed to celebrate the small victories: the first time you manage a walk without feeling dizzy, or the first time you express exactly what you need without guilt.
We have found that acceptance has been crucial to our journey living with a brain injury. We have had to accept that Mark now struggles or deals with things differently than he did before; and that is okay. It’s important to remember to embrace the changes and accommodate these in the best way you can to help yourself/your loved one cope with life after brain injury.
Remember, healing doesn’t mean going back to who you were. It means moving forward into who you are becoming. And with patience, support, and the right tools, you can find your way.
If you are trying to navigate your way through adjusting after a brain injury, our Shining After Brain Injury journal may just be the tool you need to help you find your feet again. It’s available to buy here.