Although now cured by neurosurgery, Tristan suffered from uncontrollable seizures for much of his life.
Tristan feels that his greatest achievement was his perseverance until he found a job with an understanding employer. He was fortunate to find and hold down a job as a data analyst, despite the problems he was experiencing at the time as a result of his epilepsy.
Tristan started having seizures at the age of four. His parents took him to a paediatric neurologist and he was diagnosed with a migraine-related condition. It wasn’t until he started having tonic-clonic seizures at the age of 16 that his epilepsy was properly diagnosed. This was in 1988, and he was diagnosed with simple partial, complex partial and tonic-clonic seizures. He took beta-blockers and anti-epileptic drugs. Whilst these did reduce the severity and frequency of seizures, he was still having a cluster of several seizures every month or so. He still takes Tegretol to reduce the risk of a relapse.
In June/July 2000, Tristan was very frustrated with his poor seizure control. Although the neurologists he had seen up to this point had put Tristan forward for several EEGs and various scans, none of these had shown anything of any use. He therefore contacted Epilepsy Action to request a list of epilepsy specialists in his area and demanded that his GP refer him to one of them and not just another general neurologist. He was referred by his GP to a specialist at Kings College Hospital.
In July 2001, while still waiting for his first appointment with the specialist, he had a cluster of bad seizures and ended up in A&E at Kings College Hospital. He spent one week there under observation and as a result, his first appointment was brought forward.
He had his first EEG test to record any seizure activity. A scan revealed a tumour in the left temporal lobe. Six months later, he finally saw a neurosurgeon who recommended surgery. Tristan had brain surgery in 2004 and is now seizure free.
Tristan is fairly open about his epilepsy, but found that he would not be offered a first interview for a job if he was honest about the condition on job application forms. His own experience showed that prejudice against epilepsy was the only reason for this. This problem did not stop at the application stage - when he told one previous employer’s official first aider about his epilepsy, he was kicked out of the job.
The one exception to this in Tristan’s experience was the data analyst role mentioned above. Treated the same way as all the other employees, he was given a fairly basic role to start with, and then promoted each time he showed he was up to the job. This cycle happened several times over the five years that he worked for this employer. They valued him for what he was capable of doing for them and did not allow a medical condition completely outside of Tristan’s control to colour their judgement of his ability to do the job. This attitude did much to improve Tristan’s self-esteem and confidence, which were at a low at the time.