When someone undergoes surgery to remove a brain tumour, the general assumption is that they are “fixed” and that everything will return to normal. The visible aspects of recovery—such as the scar from surgery or physical healing—can often lead to this misconception. But the reality is far more complex, especially for those who live with hidden disabilities caused by neurological changes following brain surgery. These challenges are not visible to the naked eye, and as a result, brain tumour survivors often face misunderstanding, frustration, and judgment.
As I was out running recently, I couldn’t help but reflect on just how misunderstood the recovery process truly is. Before my brain tumour diagnosis, running a half marathon would completely wipe me out for a week. A full week of sitting around, stiff, exhausted, and questioning my life choices. Yet, just last weekend, I ran 12 and a half miles on Sunday, followed by another 5 miles on Monday. To outsiders, I look fitter than I ever was before my brain tumour experience.
In many ways, I suppose I am. When your body has let you down once, you become reluctant to let that happen again. You push yourself harder, fight through physical exhaustion, and challenge your limits. But what people don’t see is it’s not just about physical recovery. What is life changing is the hidden fatigue that comes with surviving a brain tumour. It is far beyond simply being tired, so please don’t think, “Me too.” It’s the kind of exhaustion that doesn’t go away no matter how much you rest, the kind that drags on in the background long after the physical activity is done… and that’s because it’s not really being active that causes it.
The Hidden Disabilities We Don’t Talk About
If you can’t tell already, I’m a bit fatigued and easily muddled today, so if you’ve managed to read this far, I hope this is making sense!
When we think about recovery from a brain tumour, many imagine a return to normal life where the patient can jump back into all the activities they once enjoyed. However, for many survivors, even the most mundane tasks can become a struggle. While others may see us out and about, enjoying physical activities or socialising, they don’t see the invisible toll that this takes on us.
One of the most challenging aspects of living with a brain tumour is neurological fatigue. Unlike normal tiredness, this kind of fatigue is overwhelming, all-consuming, and doesn’t dissipate after a good night’s sleep. Something as simple as driving, navigating through a busy or noisy environment, or engaging in a lengthy conversation can leave us drained and struggling to keep going.
What’s even harder is how we’re perceived by others. People assume that because I’m active, I must be “back to normal.” But that’s far from the truth. They don’t see the impact that even mundane activities have on my brain—the concentration it takes to simply function, the recovery time I need afterward, and the neurological fatigue that doesn’t go away.
The Reality of Recovery
The reality of recovery from a brain tumour can be complex. It isn’t about simply healing and going back to the way things were. The surgery may remove the tumour, but it doesn’t remove the lasting effects on the brain. Survivors often face cognitive challenges, emotional hurdles, and physical exhaustion long after the surgery has taken place. These are things that don’t show on the surface.
Now this is not meant to be a ‘woe is me’ kind of post. But, while people may see me running long distances, they don’t know that every step I take is coupled with an ongoing battle to manage neurological fatigue. It’s not just about muscles and stamina; it’s about managing the invisible impact of brain surgery. I’ve had to become much more in tune with my body, recognising when I’ve pushed myself too hard, and knowing when to rest.
What many fail to realise is that, just because you’re able to do something, it doesn’t mean you aren’t dealing with a whole world of struggle underneath. There’s an overwhelming sense of exhaustion that often comes after being in noisy or busy places, concentrating for too long (for me that was keeping on top of the accounting yesterday!) or having to engage in a conversation that requires too much focus.
Breaking the Cycle of Judgment
It’s disheartening to see that societal perceptions often force people with hidden disabilities to second-guess their every move. If an amputee climbs a mountain, no one questions their determination or ability, nor does anyone see them as any less disabled. Why, then, are those living with brain injuries or other hidden disabilities made to feel they have to defend their every action?
“This cycle of judgment needs to be broken.”
This judgment often comes from a lack of awareness and understanding. People see the physical capabilities but are blind to the invisible challenges. They see the achievements but not the exhaustion and sacrifices that follow. This cycle of judgment needs to be broken.
Brain tumour survivors, and those with other hidden disabilities, shouldn’t have to justify their actions. They should be encouraged to live their lives to the fullest without fear of judgment or misunderstanding. Everyone’s journey is unique, and appearances can be deceiving.
True support means seeing beyond the surface, offering empathy without assumptions, and understanding that the strength it takes to push through these hidden challenges is immense. It’s time for society to evolve and provide a more inclusive and understanding environment for all.
Advocating for Change
In my efforts to raise awareness and promote understanding, I speak regularly to schools, businesses, and other organisations about the impact of hidden disabilities. Through these engagements, I highlight the importance of supporting students, staff, and employees who live with these challenges, rather than making them feel judged or inadequate. By fostering a culture of empathy and support, we can create environments where individuals with hidden disabilities feel empowered to thrive.
The Importance of Understanding Hidden Disabilities
The challenges we face as brain tumour survivors are often invisible. People judge us based on what they can see—our outward physical activity—but they don’t understand the exhaustion, the concentration required, or the mental toll that comes with every action. We need more awareness of what it truly means to live with the long-term effects of brain surgery.
“It’s time for society to stop judging based on surface-level perceptions and start recognising the complexities of recovery.”
There’s a need for compassion and understanding, not just when someone is visibly “sick” or “disabled,” but when they’re pushing through their invisible battles. It’s time for society to stop judging based on surface-level perceptions and start recognising the complexities of recovery along with the fact that this recovery often doesn’t come with a timescale… and there is certainly no handbook!
Support and Empathy Are Key
For those who know a brain tumour survivor, it’s crucial to offer empathy, patience, and flexibility, because life can be isolating enough already. Understand that when we push ourselves to do something “active” or “normal,” it’s not just physical effort—it’s often a monumental mental effort too. The invisible challenges we face are just as real as the visible ones, and they deserve to be acknowledged and supported.
For those of us navigating life after brain tumour surgery, it’s important to remember that recovery is not linear. We may look physically healthy, but we’re often fighting an invisible battle with every step.
So, the next time you see someone pushing themselves, whether it’s running a race or carrying out daily tasks, please remember: the real story might be more complex than what meets the eye.