From InterAction 117, Autumn 2024
Communities of disbelief
NoLoyiso Jolobe, also known as Lolli, was born in South Africa. She first moved to the UK when she was nearly 10 years old. She reflects on having severe ME in two cultural contexts.
SPEED READ…
Lolli describes her journey of diagnosis and the reactions she experienced, as a Black South African woman living in the UK, from both black and white communities. She reflects on how the social context of an illness – and the history of a community’s collective experience – can impact those with ME across different cultures. She writes poetry as a form of expression in both English and isi-Xhosa.
Journeying with ME
My significant health issues began with a heart problem. This resulted from the distress of experiencing physical and emotional abuse from another adult. I developed Takotsubo Cardiomyopathy (in which heart muscles are weakened by severe stress).
Soon after, I was diagnosed with ‘Viral Myalgia’. The GP had said that the cardiomyopathy had lowered my immunity; then I had an unresolved viral infection. (I now know that, after cardiac surgery, my symptoms of severe fatigue, weakness and chronic high levels of pain were signs of ME.)
After 17 years living in the UK, I returned to South Africa to be with family. Little was known about this ‘Viral Myalgia’. A neurologist there disbelieved and belittled me, saying that my illness was in the mind. So I kept quiet about it, plodding on, with periods of severe pain, fatigue, and being bedridden.
Years later, I returned to the UK and embarked on a career in academia. I managed to complete a master’s degree, but my symptoms meant I often relied on lecture notes from friends. They could tell when I needed them to call a taxi for me.
I embarked on a PhD in 2003, but my symptoms continued. The research element enabled me to pace myself instinctively, only working two days a week, but I still didn’t have a name for what I was going through. It was only in 2007 that I heard a radio programme discussing ME and recognised my own experience. That led me to getting a GP referral and a diagnosis of moderate ME, from ME Specialist Prof Lesley Findley.
I was advised to stop my PhD, but this was emotionally devastating and hard to accept. I pushed on with my studies, but my condition worsened, and a few months later I was diagnosed with severe ME.
My world imploded.
I had to give up my nearly completed PhD and career. What lay ahead was a journey of negotiating living with ME.
I am writing from a black woman’s perspective. An African woman in the diaspora, my social context is mainly the black and white communities. I have experienced disbelief and invalidation of my experience with ME from both.
Reflecting on social context
The social context of illness is important. It makes sense to me that the historical collective memory of a community affects whether or not people with ME receive understanding.
An English psychologist called Lynch purportedly wrote in 1714 about how to shape and subjugate black people’s minds* – useful in the enslaving and colonising processes.
The black community here is largely composed of the descendants of oppressed black people.
"I was told I should be ashamed of not walking"
I wonder: does this community’s collective experience of trauma means that they often have little time for invisible conditions? Their emotional resources to deal with life, as less valued members of the society, are depleted. They simply can’t afford to acknowledge more than they can deal with.
Those with ME in this community are disbelieved. Their experience of ME is invalidated. I had to navigate my own journey within this social context. I was often told I should be ashamed of not walking, of allowing my mother to push me in a wheelchair.
I have coped by barely talking about my illness with members of my own community. My faith was my support.
Both black and white communities are descendants of those in that social conversation. Both communities bear the legacy of their ancestors. The development of today's black psyche can’t be considered alone. We must also think about those involved in their brutalisation – directly or indirectly.
I believe that reflection is needed in both black and white communities if people with ME are to be fully integrated and supported in both.
*Anachronisms in this text have led historians to doubt its historicity, but it is still a powerful reflection of a cultural mindset.
Finding expression in poetry
Lolli writes poems in English and in isi-Xhosa, a South African language.
She uses speech-to-text software and writes in short chunks to pace her energy.
I matter too
I, yes, I
I matter too
My culture is foreign
So far from where I was born
My own body fights me
Pain is my companion
With work no longer an option
My bed is my home
My pillows my friends
But still I matter
I matter too
Ndinalo ixabiso nam
Nam, ewe, nam
Ndinalo ixabiso
Aph ‘ayaziw ‘inkqubo yethu
Akukud ‘apho ndazalwa khona.
Umzimb ‘am uyandilwa
Iintlungu ziyandikhapha
And’kwazi nokuphangela
Ukhuku lwam lelam ikhaya
Abahlob ‘am yimiqamelo
Kodwa ndisenal ‘ixabiso
Ndinalo ixabiso
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