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Sitawa Wafula: Why I speak up about living with epilepsy
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Once homebound by epilepsy, mental health advocate Sitawa Wafula found her strength in writing about it. Now, she advocates for others who are yet to find their voices, cutting through stigma and exclusion to talk about what it's like to live with the condition.
Sitawa Wafula - Mental health advocate
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Double-click the English transcript below to play the video.
00:12
I have a confession.
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I have been in an affair
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since I was 17 years old.
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I wish I could talk about
butterflies in my stomach
butterflies in my stomach
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or maps I drew on the ground
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when I think about this affair,
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but I cannot.
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I wish I could talk about
sweet words spoken
sweet words spoken
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or gifts that I received
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from this affair,
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but I cannot.
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All I can tell you about is the aftermath,
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about days I spent constantly asking:
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Why, why, why me?
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I remember how it all began.
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01:00
I was in my final year of high school,
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and my class had just won in sports,
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so we were singing and dancing
and hugging each other.
and hugging each other.
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I went and took a shower.
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Then I went for dinner.
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And when I sat down to eat,
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my teeth started chattering,
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and so I couldn't put
the spoon in my mouth.
the spoon in my mouth.
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I rushed to the nurse's office,
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and because I couldn't talk,
I just pointed at my mouth.
I just pointed at my mouth.
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She didn't know what was happening,
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so she told me to lie down,
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and it worked --
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after a few minutes,
the chattering stopped.
the chattering stopped.
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I was about to dash out,
and she told me --
and she told me --
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no, she insisted -- that I go up
to the dormitories to sleep.
to the dormitories to sleep.
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Here I was in my final year
of high school,
of high school,
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just a few months from doing
my end of high school exams
my end of high school exams
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and a few days from doing a set
of exams we call here in Kenya "mocks,"
of exams we call here in Kenya "mocks,"
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which are somehow meant to gauge
how prepared one is for the final exams.
how prepared one is for the final exams.
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There is no way I was going to sleep
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and let a set of exams mock me.
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I went to class, sat down,
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took my Kenyan history notes,
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and there I was, down Kenyan coastal town,
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with the great Mekatilili wa Menza,
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the Giriama woman who led her people
against British colonial rule.
against British colonial rule.
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Then, without any notice,
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my left hand started jerking,
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and it was as if I was marking
imaginary papers.
imaginary papers.
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In and out it went,
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and with every stroke, one by one,
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my classmates stopped
concentrating on their reading
concentrating on their reading
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and started looking at me.
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And I tried really hard to stop it,
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but I couldn't,
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because it had a life of its own.
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And then, when it was sure
everybody was looking at us,
everybody was looking at us,
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in its final show
and official introduction,
and official introduction,
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I had my first full-blown seizure,
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03:09
which was the beginning of what
has been a 15-year-long affair.
has been a 15-year-long affair.
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Seizures are the trademark characteristic
for most types of epilepsy,
for most types of epilepsy,
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and every first-ever seizure
needs to be assessed by a doctor
needs to be assessed by a doctor
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to determine if one has epilepsy
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or if it's a symptom of something else.
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In my case, it was confirmed
that I had epilepsy.
that I had epilepsy.
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I spent a large chunk of my time
in hospital and at home,
in hospital and at home,
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and only went back to do my final exams.
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I had seizures in between papers,
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but managed to get good enough grades
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to be admitted for an actuarial
science degree
science degree
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at the University of Nairobi.
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(Applause)
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Unfortunately, I had to drop out
in my second year.
in my second year.
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I didn't have good enough coping skills
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and a support community around me.
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I was lucky enough to get a job,
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but I was fired from that job
when I had a seizure in the workplace.
when I had a seizure in the workplace.
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So I found myself in a space
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where I was constantly asking myself
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why this had to happen to me.
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I lived in denial for a long time,
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and the denial was maybe because
of the things that had happened,
of the things that had happened,
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dropping out of school
and being fired from my job.
and being fired from my job.
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Or maybe it was because of the things
I had heard about epilepsy
I had heard about epilepsy
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and about people living with epilepsy:
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that they would never live on their own;
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that they would never travel on their own
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or even get work;
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that they were outcasts,
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with a spirit in them that they needed
to be delivered from.
to be delivered from.
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And so the more I thought
about these things,
about these things,
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the more my seizures became,
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and I spent days with my legs locked,
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my speech became blurred
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and on days on end, this is how I'd be.
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Two or three days after a seizure,
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my head and my hand
would still be twitching.
would still be twitching.
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I felt lost,
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like I'd lost everything,
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and sometimes,
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even the will to live.
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(Sigh)
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I had so much frustration in me.
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And so I started writing,
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because the people around me
didn't have answers
didn't have answers
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to the questions that I had.
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And so I wrote my fears
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and my doubts.
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I wrote about my good days
and my bad days and my really ugly days,
and my bad days and my really ugly days,
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and I shared them on a blog.
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And before long,
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I began to be seen and heard
by people who had epilepsy
by people who had epilepsy
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and their families,
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and even those who did not
have the diagnosis.
have the diagnosis.
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And I moved from that girl
who constantly asked why me
who constantly asked why me
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to one who not only self-advocates,
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but does it for those who are yet
to find their voices.
to find their voices.
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(Applause)
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My seizures are greatly reduced,
from two to three times a day,
from two to three times a day,
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to sometimes two to three
times in one year.
times in one year.
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I went on --
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(Applause)
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I went on to employ five people,
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when I began what was Kenya's first
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free mental health
and epilepsy support line.
and epilepsy support line.
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And I travel --
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(Applause)
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And I travel to speak about my affair,
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all these things that I had been told
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people like me living with epilepsy
could never be able to do.
could never be able to do.
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Every year, a population
as big as 80 percent of Nairobi
as big as 80 percent of Nairobi
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gets diagnosed with epilepsy
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across the globe.
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And they, like me,
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go through the emotions
of stigma and exclusion.
of stigma and exclusion.
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And so I have made it my life journey
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to keep these conversations going,
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and I keep confessing about my affair
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so that those people who do not
have the diagnosis
have the diagnosis
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might know and might have
a constant reminder
a constant reminder
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that it is alright to engage
with people like us,
with people like us,
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that as long as they pull down
the walls of stigma and exclusion,
the walls of stigma and exclusion,
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that we, just like them,
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can be able to take anything
life throws at us.
life throws at us.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Sitawa Wafula - Mental health advocateSitawa Wafula started Kenya's first free mental health and epilepsy support line.
Why you should listen
Sitawa Wafula is a blogger and nomadic mental health crusader. She's using her personal journey as a rape survivor living with a dual diagnosis of epilepsy and bipolar disorder to provide people in Africa with information and support to handle mental health conditions and deal with everyday life.
Wafula is also an Aspen New Voices Fellow with the Aspen Institute, USA and a non-communicable disease champion under the Ministry of Health in her home country, Kenya.
Sitawa Wafula | Speaker | TED.com