james's Story

My Journey Living as an Epilepsy Patient

Medically speaking, epilepsy is one of the oldest known brain disorders which is characterised by recurrent seizures, as a result of sudden excessive electrical discharges in the brain cells. According to the World Health Organization (WHO) definition, “a diagnosis of epilepsy is reserved for those who have recurring seizures, at least two unprovoked ones”. The consequences of epilepsy in terms of morbidity, mortality, quality of life and stigma differ around the world, depending on the cultural, economic, and community health background.

Although epilepsy is one of the most prevalent neurological pathologies, this subject is surrounded by stigmas and prejudice among the population, the people's awareness and attitudes towards the disease being widely discussed in the literature. It has been observed that much of the discrimination against people with this disease is motivated by the mistaken idea of impotence, fragility and mental impairment of the patient, besides fear of having to witness and deal with a seizure.

Frankly speaking, I had and have been personally experiencing the way a medical doctor diagnosed of having epilepsy been treated by medical professionals at the university, hospital and at the workplaces. Unlike in the foreign countries, epilepsy patients here are really treated differently by the surrounded people both socially and at the workplace. I personally understand the feelings of these patients and thus decided to tell you my side of story, as a patient-cum-medical doctor.

On recall, I had developed a febrile fit during infant age, on the way to the hospital. Symptomatically treated, I was normal and my childhood days went on normally, until I was noted to be staring at the black board in the classroom once in while at the age of 10. The teacher had informed my father and after examined by a Paediatric Consultant, I was started on treatment based on the diagnosis. Fortunately, after regular treatment and check-ups, my epilepsy got resolved.

Life went on as usual throughout my medical university days, with no attacks in between. I experienced my first aura during my internship time, while driving my car. Then, was occurring during my postings in the wards and in operation theatres and during on calls. Taking it lightly, I was not aware that it was one of the signs of epilepsy. During my medical officer time, as responsibilities and duties became more intense, I had experienced my first attack without an aura in a neonatology ward during a grand ward round! I managed to consult a neurologist and was on treatment and regular follow ups based on my diagnosis. I was transferred to Transfusion Medicine Unit the very next month without any counselling session and my ambition to become a paediatrician perished off just like that!

My life continued on in a local university pursuing a postgraduate programme. The frequency of attacks really increased during this programme. I was under the follow up of a famous Professor in Neurology and after proceeding on with thorough investigations, I was under treatment for a more specific diagnosis. Looking at the epilepsy diary, I used to get approximately 8 attacks per month. Doses were increased to the maximum and finally I was put on combined medication. Remembering and recalling facts and points were getting to be tough for me, driving was prohibited, swimming was not allowed. And finally, I did not make it to the finals. Was very saddening for me...

To pursue with my career and after receiving advice from a senior consultant in the medical field, I changed the track from clinical sector to administration sector. It was totally a new experience for me. There was a major turn over at the quality of my health. Frequency of attacks reduced, lesser stress, lighter duties and most importantly there was more time to rest and sleep. I managed to pursue my postgraduate studies on other professional fields and achieved my goal. On the other hand, attacks still did come occasionally without any auras at various occasions. Had been noted during presentations, meetings, discussions and during outdoor activities. Enquiring on my health by my superior, a medical doctor, I had to reveal about my diagnosis and I noted a vast change in my pattern of work in my department. The personal approach to discuss matters and cases with me too changed. I was advised to go to a different centre to manage governance. My suggestions and ideas provided in discussions were ignored and not taken into consideration. Advises and discussions were carried out directly with my junior staff, bypassing me. Basically, I was started to be ignored by my higher authority and no personal counselling given.

Personal matters such as request for marriages were denied by my girlfriends when they came to know about my health situation. Quite a number had I experienced and caused disappointment to me. Pursuing on with marriages just drops off their mind! My favourite hobbies like swimming and scuba diving get prohibited when having epilepsies. Driving and motorbike riding are not allowed.

From an overall point of view, people with epilepsy will be treated differently in various parts of the world and will experience varying degrees of social stigma due to their condition. Knowing there are different types of epilepsies with various signs and symptoms, there will be epilepsy patients moving on well in life, living moderately or living in regret.

Personally speaking, in my experience, epilepsy patients have been looked upon differently in Malaysia compared to in foreign countries. And most sadly, not many medical doctors as superiors have understood about epilepsy. Being professional, neither do they know how to approach and counsel their staff who have epilepsy, nor to solve difficulties faced by them so as to provide comfort and easiness in their life.

Whatever said, life has to go on and most importantly take what comes and live on happily and in peace. Like Jim Rohn once said, and I quote “learn to be thankful for what you already have, while you pursue all that you want ...”

By James Victor

March 2021