Living with a chronic skin condition has forced 35-year-old Nomvula Mashiyane to rebuild her life around pain, stigma and constant self-education, an experience she says many South Africans with autoimmune diseases face in silence. Mashiyane, from Ekangala in Tshwane, was diagnosed with an autoimmune disease in 2020. She says she had to teach herself what the diagnosis meant because there was never any in-depth conversation about what it meant to live with an autoimmune disease.
“Most of what I know about autoimmune diseases stems from the research I have done myself (and still continue to do). At the time I would easily spend R1,500 on a few tubes of cream, each meant to address different factors: dryness, itchiness, inflammation, hyperpigmentation and sometimes oozing,” she said. Mashiyane said when you have an autoimmune disease, your skin oozes and bleeds when scratched.
She describes the physical effect as painful and relentless: “You’re constantly itching because of external and internal issues that confuse your immune system and push it to attack your body’s tissues. “At its most severe, you have skin that oozes and bleeds when scratched. Inflammation is rampant, and you have a burning sensation; your skin is thick and leathery.
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When your skin dries, it sticks to your clothes and flakes badly.” Beyond the physical symptoms is another battle: public reaction. Mashiyane said stepping out in public invites unsolicited opinions, misdiagnosis and mockery. “You could be at a till paying for your essentials, and you will get a recommendation.
There’s always someone willing to tell you how their nephew overcame the condition; you will get stopped randomly at any given time. Of course, you will get people who diagnose you on site: ‘You have HIV; you are dirty.’ Some will straight out mock you (‘Why the leather jacket in this heat?’).” The emotional toll can be heavier than the physical one, she said. “You will also find yourself retracting socially; it takes a toll on your emotional, physical and mental health as well.
You avoid dating because you feel like you are coming into a space where this person can use it against you at any given time. You don’t understand it yourself, so you lack the capacity to teach someone else about it, let alone exist intimately with them in that state.” When I came out with my struggle and owned it unashamedly, I met many others who are navigating their own struggles and had no clue where to begin with breaking the shackles of their diseases “When I came out with my struggle and owned it unashamedly, I met many others who are navigating their own struggles and had no clue where to begin with breaking the shackles of their diseases.” Mashiyane said growing up with eczema made her initially underestimate how serious the diagnosis was. “I felt indifferent.
Given that I grew up with eczema, I took it with a pinch of salt. I didn’t understand the severity of the diagnosis at that time. I only found out about it later, after I’d done my research, how serious it is.” Her support system, especially her mother, remains consistent and caring. “The people in my life were amazing then and they are amazing now — especially my mom.
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