Ellie Pacey is a 24-year-old freelance journalist from Nottingham, who suffered a brain injury as a teenager. In this deeply personal story, she reflects on her long journey of recovery, the hidden struggles that remain years later, and the vital role that the charity Headway plays in supporting survivors like her.
Through her experience, Ellie sheds light on the challenges of living with an invisible disability, the judgment she has faced, and why continued support for brain injury survivors is so crucial.
When I woke up in the intensive care unit, I had no idea about the long, complex road to recovery that lay ahead of me. I had a brain haemorrhage from a ruptured arteriovenous malformation (AVM) at just 15 years old, and it destroyed all my functions.
Immediate recovery wasn’t quick or easy. Some days I made progress and felt hopeful, others felt utterly impossible. But, very slowly, I managed to piece my basic functions back together, one tiny win at a time.
Surprisingly, though, it was after the hospital that was most depressing for me. I’ve noticed that as time passes and my difficulties become less visible, people become more impatient and less understanding.
Friends, once supportive, became increasingly dismissive of my neuro fatigue (I got the classic, “I get tired like that too” a few times), because I “looked fine” to them. I learnt how to mask my difficulties to avoid being seen as an inconvenience to them.
For a long time, I resisted my symptoms and tried to pretend like my brain injury didn’t affect me as much as it did. I feared annoying people (and myself!) I even moved away for university, which I wasn’t ready for, only to drop out within four months due to my health.
Then came employment, where the judgment only intensified. I desperately wanted a job, to feel productive and like I “mattered” in the world. But I underestimated the prejudice disabled people face when accessing employment, as well as my hidden struggles. Naturally, I got diagnosed with depression shortly after.
Discovering Headway’s “On A Good Day” campaign
It wasn’t until early June this year that I discovered Headway’s “On A Good Day” campaign. The campaign highlights the hidden and fluctuating nature of brain injury. Pleading with people not to judge brain injury survivors solely on their good days.
I remember thinking, “It has to be a common problem for Headway to make a whole campaign on it, right?” For so long, I felt alone in my struggle because I had no one to relate to, but finally, I didn’t anymore. I felt seen.
That’s what Headway does, it makes brain injury survivors feel seen, whether through its brain injury cards, calling the nurse-led helpline or support branches, often led by survivors themselves. Headway becomes a lifeline for brain injury survivors and their families.
According to Headway, someone is admitted to hospital with a brain injury every 90 seconds in the UK — that’s 335,000 people each year. But the effects of brain injury don’t stop at hospital doors. While immediate support is often delivered, it is frequently lacking in the long term.
Brain injury survivors’ demand for support
In July, my mum received a letter from Headway. The letter explained that the ability to keep its services running is becoming “tougher by the day,” due to increased demand and rising costs.
I spoke to Headway’s services manager, Sam Clarke, to understand the issue further.
Sam explained that whilst it is struggling with funding, the demand for its services has been steadily increasing:
“We’re seeing more and more people come into our services,” Sam said. “And it’s at a time when funding is being cut across the board. That’s really where this urgent appeal originates from.”
He describes a “big picture” crisis, with mental health services overflowing and local councils lacking funding, while donations are lacking. The cost of living crisis is also causing pressure on the public, leading people to cut back. According to Sam, charitable donations are often the “first to go.”
Sam also told me that some branches that provide community support have had no choice but to close:
“These [groups] are vital community services that people rely on, and the closures show just how serious the situation has become.”
As a survivor myself, I know how lonely brain injury can feel. Still, I also know I am lucky, as my parents are very supportive. Others, though, don’t have the luxury of having a village, and these groups are the only way they can feel truly understood.
Even the nurse-led helpline has been feeling the pressure. More people are calling for support than ever, often with distressing concerns. Sadly, thanks to the government’s proposed benefit reforms, Sam reports that the charity has had several survivors expressing suicidal thoughts.
Hearing all of this made me realise just how pressing and concerning this issue is. Headway helps survivors and their families at their most vulnerable times, but it could soon find itself without help. I have barely scratched the surface of the support that Headway has to offer, and it has had a massive impact on me.
Living with judgment as a brain injury survivor
Brain injury survivors often have to live with a disability that is hidden. People think that if you look fine, you are fine. I’ve learnt to (mostly) mask my symptoms. However, I still experience fluctuating fatigue, cognitive difficulties, emotional regulation and many more symptoms.
But the hardest part? Other people’s opinions.
I’ve learnt to live with my symptoms, but I haven’t learnt to live with the judgment that comes with it. When I do an activity, say socialising at a cafe, I often have to rest the day before so I am as fatigue-free as possible. Then, the day comes when I have to socialise, and the day after, I have to recover and rest again. But the other person at the cafe only sees me when I am fatigue-free, and if you’re faced with the wrong person, it leads them to think that you’re faking.
I’ve also found that not only are people not understanding of my symptoms, but they also don’t understand that the world is not made for disabled people. I mentioned earlier about accessing employment. This had been possibly one of the biggest challenges for me. I tried to get a job with an employer; however, every job advert I came across required more hours than I could handle.
I resorted to emailing companies directly, explaining my situation, and was met with silence. I was then told by a disability employment adviser that the jobcentre could help me. They didn’t. I was humiliated and judged because I “seemed fine” instead. I remember crying with my friends about the fact that the system wasn’t meant for people like me.
Even someone who was a very close friend, who had been with me throughout it all (including the tears), fell out with me over my employment struggles. This was particularly painful as I realised my brain injury had not only changed the way I function but also changed the way people see me.
Sadly, this isn’t unusual. According to research conducted by Headway, over half of brain injury survivors report experiencing unfair treatment due to the hidden effects of their brain injury. And, even more heartbreaking, two-thirds (67%) of friendships have been negatively affected due to the same reason.
Why Headway matters
Reading Headway’s “On A Good Day” campaign is an excellent example of how you don’t just survive the injury itself, but also survive a world where disabilities are misunderstood time and time again.
That’s why the survival of the charity matters so much. Too often, it’s the first and only place survivors and family members can turn for guidance, practical support, reassurance or just someone to talk to.
Despite its challenges, though, Headway remains optimistic. Last year, the charity released its long-term strategy, outlining its plans for the next five years. The plan includes strengthening its local network, raising awareness about the hidden effects of brain injury, supporting more research, and investing in digital tools.
For me and thousands like me, Headway is a lifeline. Anyone who has recovered from a brain injury will tell you that the recovery alone is hard enough, without facing a world which consistently scrutinises the hidden effects. With Headway there, though, at least we don’t have to do it alone.
Visit the Headway website for further information and support.
Follow Ellie Pacey on Instagram and Twitter.