Beauty involves feelings, distinctiveness, and living a fulfilling life. But, as we age, our external look changes owing to a variety of factors. The following is the story of Siphe Ntsabo (34) of Parklands, Cape Town. In January 2010, Ntsabo was diagnosed with discoid lupus. It might have changed her outward appearance, but she does not allow it to dictate her life and her beauty shines from within.
Part of growing up is knowing that your body will change, and so will you change inwardly as well, shaped by new experiences and emotions. However, when your outward appearance change due to an illness you have no control over, it gives you a new perspective. For Ntsabo, lupus changed her appearance, but she remained the same, and she is happy living her life.
Ntsabo says she developed strange-looking skin patches on her body, particularly on her top parts such as her ears, nose, cheeks, and lips. Other symptoms she had were weight loss, joint aches, and bodily swelling. She went in and out of hospitals without receiving a proper diagnosis.
Living with her diagnosis
“It seemed to be sunburn, but when I went to the doctor, I was informed I had discoid lupus skin.”
She suspected stress as she was studying hospitality at Port Elizabeth College at the time of her affliction.
“They conducted a biopsy to screen for cancer potential at Livingstone Hospital in Gqeberha, where I was hospitalised for additional examinations.”
Ntsabo’s look had been affected by the disease, and it gives the impression that she was burned. She explains that a lot has changed in her life, from how people see her, to her lifestyle, to what she can and cannot eat, and where she can and cannot go.
Coping with life-changing events
According to her, after being diagnosed with discoid lupus, it was discovered that she also had SLE lupus (systemic lupus erythematosus). She had a fever that lasted more than a week and returned after a brief period of fever treatment.
“I’ve had lupus for more than 12 years. I’ve taught myself that lupus should not define who I am.”
Ntsabo expresses that living with certain diseases may have a minor impact on one’s life. Because of her condition, which is more of a special need, she says her social circle has shrunk.
She may have lost other people as a result of her inability to go to some places, like the beach, Ntsabo says, because the beach atmosphere would trigger so many things in her body and system.
“I don’t just go anyplace without thinking about how it will affect my health.”
Although she also lost her mother to lupus-related complications three years ago, Ntsabo maintains that she hasn’t changed from the person she was before getting the condition.
What exactly is beauty?
Staring at someone, whether they are slim, huge, burned, black, white, or hobbling, is quite disrespectful, Ntsabo notes.
“I’ve seen a lot of people staring at me; I know I look somewhat different, but life would be a terribly dull place if we all looked the same, right?”
She is a lupus advocate; she exercises, attends church, and attends solidarity spaces to talk about beauty and lupus. “I don’t let lupus steal my joy; I work in the hospitality industry, which isn’t easy. But I’m not going to sit at home feeling sorry for myself.”
Rise and shine!
Motivating others to accomplish something that accomplishes a precise and immediate objective is what motivation is all about.
When you’re motivating people to do something they might not be comfortable doing, especially those who used to consider themselves more normal than they are now, you also need to be out there, showing the world that being a human isn’t all about putting make-up on, doing nails, and having surgeries, says Ntsabo.
“Due to this problem, I don’t use any scented cosmetics, and some clothing qualities cause my skin to itch. Yet, I don’t let it stop me from feeling beautiful.”
What matters is that you live your life despite the obstacles, adds Ntsabo.
Lupus symptoms, diagnoses and potential treatments
According to Pontso Moiloa, head of the Johannesburg-based non-profit organisation The Lupus Drive, lupus is a chronic, intricate autoimmune illness that affects millions of people globally. Lupus affects more than 90% of women, and most of them are diagnosed between the ages of 15 and 44.
“With lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs – the kidney, brain, heart, lungs, blood, skin and joints.”
Lupus symptoms include fatigue, fever, hair loss, facial rash, dry eyes and lips, thyroid problems, gastrointestinal disturbances, swollen and painful joints, and pulmonary issues.
“Other people will tell you something different. There are several varieties of lupus, according to what I’ve learned from the organisation’s members.”
Other types of lupus include systemic lupus erythematosus, discoid lupus erythematosus, nervous system lupus, and drug-induced lupus, explains Moiloa.
Lupus isn’t curable, adds Moiloa.
“We borrow cancer medication; it assists with some symptoms of lupus but no, it’s not a cancer. Remember lupus mimics any and every condition. There are certain medications we take from cancer treatments that assist in treating lupus sumptoms.”
Pontso Moiloa
Lupus is tricky, she explains.
“We treat symptoms identified by an individual. Also, lupus is different for everyone; hypothetically speaking if we both have SLE, it won’t be experienced the same necessarily.”
For more information or support, contact The Lupus Drive.
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