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- Tebogo Mashiyane has had lupus erythematosus for 10 years.
- Her quality of life has been greatly compromised by this autoimmune disease.
- An advocacy group has called on the SA government to recognise lupus in its awareness programme.
When Tebogo Mashiyane was a teenager, she often felt tired and found it challenging to complete tasks. People around her thought that she was lazy, but she could not control what was happening in her body. She looked normal and healthy but she did not feel that way.
Now, at 40, Mashiyane is still facing difficulties with fatigue, which is severely affecting her personal and professional life. After many years of not knowing what was wrong with her, she did, however, receive a diagnosis 10 years ago.
"I've always been a tired person, sleeping a lot when I was growing up, but they just attributed it to laziness. And then, when I went to tertiary, it was fine. But then, after I had my first child, my daughter, I started experiencing the same symptoms I had as a teenager," she explains.
Mashiyane spent a lot of 2012 in and out of the hospital with different symptoms like breathlessness, chest infections, and ulcers. During a hospital visit, a doctor noticed a sore on her nose that wouldn't go away and decided to run other tests.
"The results came back and indicated that I have lupus, systemic lupus erythematosus (SLE)," she says. "I was shocked. I had never heard of such a disease before. I went to Google, and I started crying because the things on the internet are scary."
What is lupus?
According to the South African Rheumatism & Arthritis Association, lupus is an autoimmune disease where the immune system attack body tissues, causing inflammation and, with time, damage, somewhat like an allergic reaction. It manifests with many symptoms, including joint pains, skin rashes, muscle aches and fatigue.
The association states that people experience lupus to different degrees. Some have a mild form that only causes skin rashes and joint pains. Others have a life-threatening form of the disease, involving vital organs such as the brain, kidneys and heart. Because symptoms mimic other conditions, it is difficult for doctors to diagnose lupus. There is no cure, but there are ways to manage the condition.
"The course of the disease can be quite unpredictable. Most patients go through periods where they are unwell (known as a flare) and quiet periods (remissions), while a few develop a more progressive, relentless form of the disease," the organisation states.
The condition is nine times more common in women than men and also more common in black people.
Extended medical leave
Lupus is unpredictable. Sufferers can't tell whether they will be well or sick the next day, says Mashiyane.
She explains that in her 20s, she could cope well with her lupus symptoms as she was responding well to medication, but the symptoms became worse in her 30s.
"It became worse. I was absent from work all the time. It became even worse after I contracted Covid-19 last year. That's when everything just spiralled out [of control]," she says.
After her Covid-19 infection, she started experiencing breathing problems as well.
Mashiyane is a teacher and is currently on extended medical leave.
"My doctor has applied for special leave for me because my body can't take it anymore. The medication I have been using is not working," she says.
Unpredictable flares
"Everything is quite depressing and heartbreaking. I am victimised at work because people don't understand why I am frequently absent and why I am falling behind on work. It hurts me a lot," says Mashiyane.
Living with lupus has not only impacted her career but her family plans as well.
"My husband and I planned on having four children, but we only have two. After my second child, my doctor told me that I can't get pregnant again," she says.
Mashiyane says that she has had to significantly scale down her social life because of lupus.
"Before, I used to go out a lot. I used to go to parties. But I had to slow down. Even with vacations, I can't be away for longer than two days," she explains.
She says that it's hard to plan your life and activities because of how unpredictable flares are.
Help from family and support groups
Fortunately for Mashiyane, she has a supportive family who helps her navigate living with lupus.
She says that her husband and children know the drill when she has a flare-up and know how to support her when they happen.
Mashiyane is also part of a support and advocacy group and advocacy, The Lupus Drive. Founder Pontso Moiloa says that the organisation is there to help people access information on the condition and help loved ones understand it.
"The most important thing is to understand that your loved one can wake up and go to sleep a normal person, and wake up the next day very sick. The most important thing is to identify what happens when your loved one has a flare-up," Moiloa says.
She continues: "When you have a collapse, you can't do anything about it. We've actually identified that when you collapse, most of the time, people can't walk. People can't speak, people can't cook for themselves. They can't stand up for a long time. So you do need that support structure."
Winter is tough
As winter draws closer, Mashiyane has to prepare for her worst season.
"Winter is very aggressive towards us as people with lupus because it mostly affects our joints. It's arthritis, and our joints are stiff. It's a problem," she says.
Moiloa says that it's important that family members understand the different times that their loved ones may experience difficulties.
"There are times in winter when I can go to bed, wake up the next day, and I'm purple and paralysed for a day. It mimics every condition under the sun … it's truly about understanding the condition itself," says Moiloa. says Moiloa.
Moiloa calls on the national health department to give people with lupus better support and recognition as it is not included in the department's Health Awareness Phila Calender.
"We need to start with the Department of Health to identify and categorise lupus as a condition in South Africa. Lupus or lupus-related conditions are not mentioned in the calendar. Lupus is a condition that is not being treated. We are being given medicine from other conditions to treat symptoms," Moiloa said.
*This article was updated on 10 May 2022.
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