A dream come true: Testimony from an "epileptic"

To carry the burden of epilepsy in Africa feels like a curse or punishment that victims serve, although through no fault of their own. If one is able to endure the pain until the end, however, there is a lot to be gained. We can liken this to a heavy-weight lifter, where the more weight he carries, the more he gains in building muscle even though his pain increases. There are many misconceptions associated with mental illnesses, the majority of which accompany serious conditions like Epilepsy, which my wife has battled with for quite some time.

Joyce* graduated from the Institute for Research and Land Management* from Entebbe, Uganda. I look up to her for her special propensity for resilience and perseverance, she is truly one in a million for me. Armed with her strong faith, nothing can come in her way.

I met Joyce* in 2013 when I had just joined nursing school and was working part-time as a Biology and Chemistry teacher in the village secondary school. In addition to teaching, I was also coaching students and providing psychosocial support to those afflicted by psychological trauma due to sexual molestation and drug addiction. At the time, she was also residing in the same neighbourhood as I was and we interacted with each other a lot on social matters. Sometimes I would act and sound silly just to keep the ball rolling. She needed extra support and counselling, as she was a candidate in her final year which was the advanced level of her secondary education. She had a lot of troubles in her life and no one to share the burden with. Memories of her being tortured by her step-mother forced her to seek some kind of sanctuary in drug abuse and risky sexual acts. She had lost all hope and unfortunately, her life was about to get harder.

"I promised her that I would never leave her, and that I would support her until I saw her dreams come true. I fell in love with her at that moment." 

- Joyce's husband

At some point, Joyce* began to complain of headaches and hearing authoritative voices commanding her to kill her mother. One day, as I was trying to inquire more about the problem, she just fell down and started to have a fit. Her body and hands became stiff and straight, her chest extended outwards and saliva pooled out from her mouth. To me, these were all clear symptoms of epilepsy, and as challenging as it was to see, it was worse for Joyce*. She felt ashamed as she never wanted anyone to see her during an epileptic attack. She was afraid to lose friends if they came to know of her condition because of the myths associated with the condition e.g. it was contagious and one could catch it from the saliva of a person having an epileptic fit. I promised her that I would never leave her, and that I would support her until I saw her dreams come true. I fell in love with her at that moment.

In 2014 Joyce* underwent a thorough consultation and was able to start work at the Institute for Research*. Certain types of work were prohibited to her i.e. work that involved a lot of mental effort and cooking. Despite her condition, she was not taking her medication as she claimed it made her weak and lose concentration. Although she did not take her medication regularly, she found that once she took it, she didn’t have to rely on it again until another episode occurred. She has not had a relapse since which I see as a good sign for her treatment prognosis. The major triggers of her epileptic fits were stress and underlying medical conditions like malaria, but once her condition was managed well, she was the happiest woman anyone could hope to be around. She recently graduated last year and is currently working with a land survey firm in the northern part of the country. Our experiences led us to devote most of our time and resources in serving the mental health community. Joyce* and I pray that this story may serve as inspiring and life-changing for all those who have lost hope like we once had, but persevered. 

Names with an asterisk (*) have been changed for safety and privacy reasons.

Families and carers
Human rights
Empowerment and service user involvement
Treatment, care and rehabilitation
How useful did you find this content?: 
Your rating: None
No votes yet
Log in or become a member to contribute to the discussion.