True Story – Mmatshepo Mushi On Living With Lupus

Fourteen years after being diagnosed with lupus, Mmatshepo Mushi, 32, is joyful and not letting the chronic disease get in the way of her living a fulfilled life

“The year 2003 was tough for me. I was in matric and keeping up with my studies was difficult because I was in and out of hospital throughout the year. I suffered constant headaches and nausea, so I felt weak all the time. On top of that, my digestive system was compromised. At first, the doctors diagnosed me with hepatitis but as it turned out, that wasn’t the problem.

The symptoms became worse when I was a first year student at the University of Pretoria, studying towards a BCom in Economics degree. The arthritis started and my skin began to flare up. I was just 18 years old and couldn’t understand why my joints hurt. People wouldn’t take me seriously when I told them that there were things I couldn’t do. No one understood what was going on, even a friend of my parents – who is a doctor – would say I should get up more and stop being lazy. I swear I just felt tired. Then the hair loss followed, which made me feel so miserable. My self-esteem and self-confidence took a huge knock. I became antisocial and had very few friends who understood what I was going through. Still, I didn’t know what was going on. I prayed for it to pass and convinced myself that everything happens for a reason. But when I had to shave my hair off and start wearing wigs, reality hit. It was such a surreal moment – I wasn’t even 21 yet and had to wear wigs already!

I was diagnosed with lupus in 2004 by my dermatologist because my hair had fallen out, my skin was scarred and the headaches had become very severe. She did a biopsy on the scars on my head and used a blue thread to stitch me up. I was horrified. I’m a black person that had blue thread on her head and I couldn’t cover it up. Tests confirmed that I had discoid lupus, which is a chronic autoimmune disease that affects the skin. I actually took the matter very lightly at first. I wasn’t even fazed when doctors predicted the worst case scenario.

By 2005, the symptoms had gotten so bad that I developed a kidney problem. I’d get an infection every three months. I couldn’t use public toilets because my movements were restricted. I’d go to campus for my lectures and leave for home straight after. I didn’t want to carry sanitisers to clean toilet seats – it was just too much. From 2005, all the way to 2007, my health deteriorated so much that I was forced to drop out of varsity. Having lupus is very hard to explain because there are good and bad days. I wake up with a headache every single day so I’ve had to learn to manage the pain. Sometimes, my body will stiffen up, making it difficult to get out of bed. I constantly have to tell myself that I can do it. Then there’s the ‘oh, it’s the kidneys again’ comments because of the recurring lower back pain. From time to time I’ll be admitted to hospital to treat the swollen kidneys or whatever else is wrong. I’m very fortunate to have great family support. Sometimes I’d tolerate the pain in silence because I didn’t want to worry my parents, siblings and friends. Whenever they’d ask me if I’m okay, I’d dismiss the question with ‘it’s just the usual’. The only time they can tell that I’m not feeling well is when I don’t get out of bed by 8 am.

I’ve learnt to listen to my body and react to symptoms accordingly. In 2009, I enrolled with Unisa because it allows selfstudy, which I can do at home. I now have a BCom in Economics degree and currently working towards another BCom in Financial Management. I work part-time for two NGOs where I handle the finances and admin, as well as help to source funding. I love what I’m doing because it’s made me become business-minded. Never mind being employed, I never thought I’d be writing business proposals and briefs. It’s such an amazing feeling. I don’t have to go to the office because I can work from home. The corporate world doesn’t really accommodate employees with lupus. I really wouldn’t be able to cope with the stress.

Lupus progresses. It also affects my heart, so I have to see a cardiologist once a year to treat hypertension. I have to take medication for that too. I have tried various remedies – my parents wanted me to try homoeopathy but I couldn’t stick to it. I’m used to western medicine now. It’s manageable. My kidney infections have lessened so they don’t trouble me as much. But with lupus, illnesses overlap so it’s a neverending process. I have fibromyalgia, which affects my bones and muscles, because it’s linked to arthritis. I usually get flu-like symptoms and my fingers get swollen and discoloured in winter. In summer, I have to make sure I’m covered or else the heat will affect my joints. I also have an eye problem. I’m currently waiting for a cornea transplant.

I’ve had to become strong and positive because this journey has been long. I take each day as it comes and I now consider myself lucky because I’m not always in hospital. Some people have it worse. My organs, except my eyes, are relatively healthy now. When I was 25, I did have a ‘why me?’ moment – but I now know that lupus doesn’t define me. I live a full, happy life. My sisters are my best friends. We love to entertain our friends or go out to explore various restaurants.

I’m such a joyful person because of what I’ve had to endure. I used to be very shy but now I’m open. Yes, people have recommended support groups that I can join, but I’ll see how it goes. Maybe I will join one in the future. I’ve managed to handle my illness and I’d love to show others that it’s doable. I don’t fear death. I know we’re all going to die and my Christian faith doesn’t allow me to wallow in fear. Seven years ago, I planned my funeral because it was tough and I couldn’t handle the pain. Now when my sisters and I recall those days, we just laugh. I thought about death a lot back then. Yet, here I am, surviving.”

I’ve had to become strong and positive because this journey has been long. I take each day as it comes and I now consider myself lucky because I’m not always in hospital.