When Mark sustained a brain injury, I had no idea how much our lives were about to change. I remember sitting by his hospital bed, hoping for his recovery, but not yet realising that even after we were discharged, there would be a long road ahead. Brain injuries don’t just affect the person who sustained them – they affect the whole family.
What I’ve learned since that day is that brain injuries often come with hidden disabilities. You can’t see fatigue, memory loss or sensory overload. From the outside, Mark might look “fine” - but what goes on beneath the surface is much more complex.
The Changes We Faced (And Still Do)
1. Fatigue
One of the biggest day-to-day challenges is managing fatigue, and I don’t mean just being a bit tired. I mean cognitive fatigue that hits Mark like a bus after even the smallest task. A conversation, a trip to the shop, even watching TV for too long can drain Mark completely.
We quickly learned that pacing is key. That means not cramming too much into one day, even if he “feels okay” at the time. We make sure to plan our weeks out in advance so we can ensure we spread things out. What doesn’t work is ignoring the early signs of fatigue, like irritability or mood swings, as that always ends with burnout.
2. Noise and Light
Before the injury, Mark loved travelling, and being in a busy airport was never an issue. Now, too much sensory input overwhelms him, and the airport is the perfect recipe for this. Bright lights, lots of people, too many noises - they all compete in his brain, which leads to major anxiety and stress.
So we’ve made changes. We still travel, but we will try to get through check-in as quickly and early as possible so that we can find a quiet place for Mark to rest and reset before we board the plane. It’s not about avoiding life, it’s about adapting it to what Mark can manage.
3. The Emotional Rollercoaster
This one was hard for both of us. Brain injuries often affect emotional regulation, especially if the injury is to the part of the brain that looks after your emotions. Mark can go from calm to irritated in a heartbeat or go from happy to feeling super low for no obvious reason.
At first, I took it personally as I didn’t understand why he was suddenly angry or withdrawn. Over time, I’ve learned to pause and ask: is this him, or is this the injury speaking?
We’ve found that open communication, taking time-outs, and sometimes just sitting in silence helps far more than trying to “fix” the emotion. What doesn’t work is pushing against it or dismissing it altogether, as that only leads to more overwhelm and a sense of disconnection between the two of us.
4. Memory Gaps and Repeating Ourselves
Short-term memory is one of Mark’s biggest challenges. He might ask the same question five times in an hour and not remember the answer each time. At first, it was frustrating (for both of us), but now we make use of the alarms and reminders on our phones, putting notes around the house, and gentle, regular reminders when we have somewhere important to be.
Repeating myself isn’t annoying anymore, because I know it’s not forgetfulness by choice, it’s part of the injury.
5. Changing Social Circles
This one can be quite upsetting. Some friends drifted away… Not out of malice, but because they didn’t know how to respond. Others didn’t understand that Mark couldn’t just "bounce back" or “get over it.” They’d invite us out to busy places, not realising how exhausting that would be, and we’d have to decline.
But we’ve also gained a new community of people who do get it. Other survivors and carers who share our journey, understand the daily struggles, and offer support without judgment. We’ve also grown closer to certain friends and family members who always go out of their way to be as accommodating as possible for Mark, which means the world to us.
If you're supporting a loved one through this, know this: some friends might drift away, but new, deeper connections can grow in their place.
The Impact on Us as a Couple
Our relationship changed, I won’t sugar-coat it. I became a carer overnight, and sometimes it felt like I lost the man I married, sadly. But with time, patience, and a lot of honest conversations, we’ve built something new. Not the same as before, but we are stronger than ever now.
We now celebrate the small wins. A full day without fatigue, a conversation where Mark remembers everything, a social visit that doesn’t leave him drained - these are our victories.
What We’ve Found Works (and What Doesn’t)
What works:
- Routines: Predictability helps ease anxiety and manage energy.
- Visual cues: Post-it notes, phone reminders and alarms are our best friends.
- Downtime: Planned rest is essential, not a luxury.
- Support groups: Both survivor and carer spaces.
- Gentle honesty: Saying “I’m struggling today” opens doors for understanding.
What doesn’t:
- Pushing too hard: “Just try it” rarely ends well.
- Pretending things are the same: They’re not, and that’s okay.
- Comparing to others’ journeys: Every injury is different.
- Going it alone: Carers need support too.
The Family Impact
If you're close to someone with a brain injury - whether you're a spouse, parent, sibling, or friend - you’re likely adjusting, too.
You might have to:
- Change your expectations.
- Learn new ways to communicate.
- Be okay with cancelled plans.
- Take on extra responsibilities.
It’s tough, and some days feel unfair. But if I’ve learned anything, it’s that healing is slow, non-linear, and personal to everyone. And it’s not just physical either - it’s emotional, mental, and relational too.
For our family, acceptance came slowly. We had to mourn the life we thought we’d have, to make space for the one we do. And while this new life is harder in some ways, it’s also filled with new perspective, a newfound appreciation for life, and opportunities we would not have had if Mark hadn’t sustained his injury.
You’re Not Alone
We know how isolating brain injury can feel - not just for survivors, but for the people who love them. That’s why we’re hosting a free webinar on the day-to-day impact of brain injury and how to adapt and make changes in your everyday life.
We'll be sharing more of our story, what we’ve learned along the way, and practical tips for carers, family, and friends.
Register now to save your place - we’d love for you to join us and connect with others who understand what you're going through.
Click here to register!