When epilepsy is mistaken for poor concentration: the patient safety risks of delayed recognition in young people

Summary

When most people think about epilepsy, they imagine dramatic convulsive seizures that are immediately recognisable as a medical emergency. However, not all seizures look like this. Some can be subtle, brief and almost invisible to the untrained eye. In this blog, Madeline Bolton-Smith, an epilepsy patient advocate, shares her experience of epilepsy as a child and suggests three patient safety lessons that could help reduce some of the unnecessary emotional harm that many young people with epilepsy experience.

Content

Before my epilepsy diagnosis at 13 years old, many of my symptoms were repeatedly misunderstood within school settings. I would frequently ’zone out‘ during lessons, lose track of conversations and struggle to retain information I had only just heard. Teachers understandably assumed I was daydreaming or not concentrating properly. From the outside, I likely appeared distracted or disengaged. In reality, I was experiencing absence seizures.

Looking back on the experience 17 years later, I think there is an important patient safety conversation around how easily neurological symptoms in young people can be misinterpreted when they do not fit familiar expectations.

One of the most difficult aspects of epilepsy is that its effects often continue long after the seizure itself has ended. The closest comparison I can give is concussion. After some seizures, my brain felt bruised and exhausted, as though every thought required enormous effort. My body would be desperately signalling that it needed sleep and recovery, yet I was expected to continue through a full school day and function normally.

At the time, I did not have the understanding or language to explain what was happening within my own brain. I simply knew that concentrating felt increasingly difficult and that I often felt drained and mentally disconnected from the world around me.

Memory difficulties became one of the biggest hidden challenges of my epilepsy. I could appear attentive whilst retaining very little information afterwards. This had a major impact on my confidence and self-esteem;  when neurological symptoms remain unexplained, it is very easy for young people to internalise the belief that they are lazy, unintelligent or simply not trying hard enough.

Medication later created additional challenges. Anti-seizure medications can affect concentration, memory, processing speed and fatigue in ways that are not always visible externally. At one stage, whilst taking a particular medication, I failed all of my GCSE mock exams. Later, after changing medication, I went on to achieve A-C grades in the real exams.

During this period, I had one particularly unpleasant meeting with my head of pastoral care during which she discussed my inattentiveness and apparent lack of effort in my studies with my father. It was in that moment that my father laid out the revision notes and wall charts I had painstakingly created, to prove that the effort was there but my brain just wasn’t absorbing the information properly.

It is moments like that, where someone defends and believes in you, that help make the condition a little more bearable.

That experience demonstrated to me how significantly epilepsy and medication side effects can affect educational performance and cognitive functioning. Sometimes difficulties in school are not behavioural or motivational issues, but signs that a young person is struggling with an underlying medical condition or treatment burden.

Although epilepsy is often discussed primarily in terms of seizure control, I think the psychological and social consequences of delayed recognition can sometimes be underestimated. Feeling misunderstood over long periods of time can profoundly affect confidence, identity and mental wellbeing.

Reflecting on my experiences all these years later, I believe there are several important patient safety lessons here:

• First, we need broader awareness of what neurological symptoms can actually look like in young people. A child who suddenly seems absent, confused, forgetful or mentally disconnected may not simply be disengaged or inattentive.
• Second, we need greater recognition of the cognitive and emotional impact of both epilepsy and anti-seizure medications. These effects are often invisible, but they can significantly affect education, wellbeing and quality of life.
• Finally, I think we need to listen carefully to patients and young people when they repeatedly say something feels wrong. Sometimes symptoms that appear subtle externally can reflect a much larger hidden struggle internally.

My epilepsy was eventually diagnosed as drug-resistant following years of failed medications and status epilepticus seizures. This led to the SEEG, a form of invasive investigation used to monitor seizure activity, and eventually, after I campaigned for access to treatment during the NICE consultation process, a pioneering form of neurosurgery called LITT (Laser Interstitial Thermal Therapy).

Despite everything that happened medically, some of the most lasting memories from my teenage years involve feeling misunderstood before anyone realised I was unwell.

Earlier recognition and greater awareness of invisible neurological symptoms will not prevent every delayed diagnosis. But better understanding within education, healthcare and wider society could help reduce some of the unnecessary emotional harm that many young people with epilepsy continue to experience.

About the author

Madeline Bolton-Smith is the author of Diary of an Epileptic: The Hidden Reality and an epilepsy patient advocate who has contributed to awareness campaigns, patient advocacy initiatives and media discussions surrounding refractory epilepsy and epilepsy surgery.