Lived Experience
Behind every statistic is a person. Behind every myth is a life affected by the beliefs of those around them. This page shares the words of people in Kenya living with epilepsy and Parkinson's disease — in their own voices, describing their own experiences. These testimonies were gathered as part of the Canvas for Change research project. They are shared here because real voices change minds in ways that facts alone cannot.
Being Pushed Out
For many people with epilepsy and Parkinson's, stigma does not arrive as open cruelty. It arrives as absence — as not being invited, not feeling welcome, slowly stepping back.
I do not even go for burials because of this condition. Whenever I go for such events, I immediately get a seizure.
It has been long since I last went to a social gathering — not at night, even in the daytime I still do not go... It has been a long time since I last went. I do not even remember when I last went.
Even if you are not told to go home — don't you feel it? For others they just tell you bluntly. Others secretly pinch each other while asking why I have come. Will you go next time?
Yes, it's shameful… People will be looking at you. Everyone's eyes are on your body. Won't you feel shy?
Shame and Stigma
Stigma is not only what people say. It is the silence, the stares, and the slow erosion of a person's sense of belonging. These words describe what that feels like from the inside.
People look down upon them. People come and say things like 'you have seizures, do you think I will come look for you.' You will be left wondering if you are human — until another person comes and affirms that you are human, that you will see indeed you are human, it is just your condition.
It is shameful going to some social occasions. If you are shaking like this — will you sit comfortably at that occasion? You will just walk away. Everyone will be looking at you.
They hide because they are ashamed of the condition. The disease is not meant to be shameful — but you will just look at your colleagues, they are unlike you.
Witchcraft and Misunderstanding
When communities lack accurate information about neurological conditions, people search for explanations. These testimonies show the real cost of that gap in knowledge.
Maybe they saw I was progressing well, so they bewitched me. What else could it be.
People had planned that we should not get married, so we stay at home and work and feed people at home all our lives. But I got married — so they were shocked.
These beliefs are not signs of ignorance. They reflect the gap between lived reality and available information. Challenging them requires compassion, not judgement.
Family and Rejection
The people closest to us can be sources of the greatest support — or the deepest pain. For some living with epilepsy or Parkinson's, the hardest rejection comes from home.
My brothers and sisters always beat me up. They tell their wives not to respect me. Sometimes they cook and eat while I am there and I am not supposed to eat their food.
I can be given food, or sometimes we eat together — then after that they might start abusing me that I have eaten their food and I won't do anything. They tell me to go and find my own food.
I realised they do not like me. I isolated myself. I decided not to visit them.
Outsiders got into my husband's head and he had to chase me away.
Kindness and Support
Stigma is not the whole story. Alongside rejection and misunderstanding, there are acts of kindness, loyalty, and solidarity — quiet moments that remind people with these conditions that they are valued.
His mother is the only one who is mean — but his siblings treat me well. They say that I am the cause of his life being better.
When neighbours see me in that state, they rush towards me. One holds me, another says to take me inside.
The neighbours love me even though I have this disease. If I refuse to eat ugali and someone has cooked rice, they bring me some and tell others to leave me alone.
At first some thought it was witchcraft — but now they know it is a disease, because I don't hide. I told them what it is so that if someone else gets it, people don't say they've been bewitched.
Join the Conversation
These voices show us what stigma does — and what compassion can do instead. We invite you to reflect, and to share.
Follow the campaign on social media and add your voice. #VunjaUnyanyapaa | #CommunityDialogue | #BreakTheStigma