Johannesburg woman’s life forever changed after lupus diagnosis

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Desiree van Niekerk was diagnosed with lupus
Desiree van Niekerk was diagnosed with lupus

By having the right insurance policies in place, Desirée van Niekerk didn’t have to worry about her financial wellbeing after she was diagnosed with this chronic auto-immune disease.

Desirée van Niekerk (43) woke up one morning in 2015 with blurry vision, blood shot eyes and excruciating pain in her eyes. She was terrified, but at the time she didn’t realise the seriousness of her situation. “I initially thought it was pink eye,” she recalls.

She went to her GP, but the medication he gave her didn’t work. “I then went to an optometrist, but he took one look at my eyes and said that whatever was wrong with me was above his paygrade.

“I was referred to an ophthalmologist, who quickly figured out what was wrong with me – uveitis.” This is a type of eye inflammation that can cause redness, pain and blurred vision. The onset of symptoms can happen suddenly and worsen quickly.

Finding the cause of Desirée’s uveitis took some time. She stayed at Wits Donald Gordon Medical Centre in Johannesburg for two weeks as her doctor did various tests. Ultimately, she was diagnosed with lupus – a long-term auto-immune disease in which the immune system goes into overdrive and starts attacking healthy tissue.

The diagnosis was a shock. “I was always very active and healthy. I ran 10 km races on weekends, and I was a real gym-bunny. And I had never been seriously ill before. No one in my family had been diagnosed with lupus. The only time I had ever heard of it was on an episode of the TV series House. I’ve never heard of anyone having it for real,” Desirée says.

“After the diagnosis, my doctor told me that I would have lupus for the rest of my life – it’s not something you can cure – and I need to prepare myself for the long haul.”

Lupus is called the “disease of 1 000 faces” because its symptoms vary greatly. “In my case, it’s mostly my eyes that are affected, but I also experience joint and muscle pain. I feel nauseous. I also struggle to sleep, which means I’m often tired. It’s like a vicious circle: you’re unwell and tired, which makes you depressed, which makes you feel even worse.”

A difficult decision

Asking to be medically boarded was one of the hardest things she’s had to do, says Desirée. Working as a marketing manager in the automobile industry, she often put in 14-hour days, but her condition made this impossible. “My vision is very blurry. I see double or triple of everything. I couldn’t read spreadsheets. I couldn’t see who it was when my boss walked into the meeting room. I often had to take time off, which meant I was behind on work or my team had to pick up the slack. And that wasn’t me. My work was so central to who I was.”

It was a difficult decision to make, but looking back, Desirée knows it was the right one. It meant she didn’t have to deal with work stress, giving her the opportunity to focus on herself and her health.

The fact that she had severe illness and disability cover also meant that she didn’t have to worry about her financial wellbeing. “My dad was always adamant about having the right insurance policies in place; I took out my Old Mutual Severe Illness and Disability cover policies ages ago,” she says.

She first put in her severe illness cover claim, hoping that it would cover her bills and debt. “Financially, I was under a lot of pressure because my medical bills were incredibly high. Some of the treatments cost a fortune. I didn’t even know that lupus fell under dreaded disease, but my financial adviser, Alan Pruis, told me I could claim.”

She received a tax-free lump sum pay out from Old Mutual. “It felt like I won the lottery. It covered my bills and debt, and it paid for a number of medical procedures I had at the time.”

Later, after being boarded, her disability cover paid her a second lump sum. She draws a monthly ‘salary’ to cover her bills and living costs; the rest she reinvested.

Prioritising her wellbeing

These policies – both of which paid her out in full – gave Desirée peace of mind, allowing her to focus on what matters most – her health. “If I didn’t have these policies, I would have been under incredible financial pressure, and there’s no way I would have been able to stop working. Or I would have had to move in with my parents and they would have had to look after me. All the stress and anxiety I had about how I’ll put food on the table or pay my bills – it just melted away.

“I now have the time and means to look after myself and my health.”

The lump sums also allowed Desirée to upgrade her medical aid. She receives monthly infusions and cortisone injections in her eyes. She’s hoping these regular eye injections will soon be replaced with cortisone implants that slowly release medication. “I would never have been able to afford the treatments I get now if I didn’t upgrade my medical aid.”

And should she later suffer from a different severe illness, she can claim from her Old Mutual Severe Illness cover policy again. “And with lupus there is a strong possibility that this could happen, but I’m still covered if it does.”

Some days are worse than others, both in terms of her symptoms and emotional wellbeing, but Desirée has found ways to adapt. “It’s amazing how my other senses – like my smell and taste – have improved,” she says. “I love reading. I can enlarge the text on my Kindle. And on my phone, I can enlarge screenshots. I have programmes on my computer that make it easier for me to read emails. But even then, I can only read for 15 minutes before I experience incredible pain in my eyes.” She hasn’t learnt braille yet, but she’s considering it.

“Emotionally, I also see things differently,” she says. “I’m more thankful for what I have. I was very career-driven and materialistic, but life is precious and short. My pets – my two dogs and three cats – my family, friends and loved ones are what really matters in this life.

Old Mutual
Desiree with her fur babies

Why you should get cover

We hold on to the hope that we won’t be affected by a debilitating disease, but it’s beyond our control. According to a global survey, one in four people will become disabled, whether through injury or illness, during their working career.

And when faced with a tragic illness, the last thing you should have to worry about is money. You need all your strength and energy, and the necessary time off from work, to focus on healing and recovery. 

Illness and disability insurance allows for this. It reduces financial anxiety when you can’t earn and removes the stress of not knowing how you’ll pay all your bills (including medical) and living costs.

Old Mutual offers its customers the flexibility to build disability insurance that suits their unique needs. Old Mutual’s Personal Cover offering includes Disability insurance. Depending on which product you choose, Old Mutual will pay out a single tax-free amount or a monthly tax-free payment for up to 24 months, if you are impaired, unable to work or take care of yourself due to an illness or injury. 

With the help of your financial adviser, you can structure your cover to suit your needs and only pay for what you need. Depending on the cover amount, you have a choice of underwriting options – your premium could be cheaper if you go for medical tests and you’re healthy. And you can get rewarded for being physically and financially fit through the Old Mutual Rewards programme. 

The time is now to get Old Mutual Disability insurance that is right for you. Speak to your financial adviser, call 0860 60 60 60 or visit Old Mutual for more information. 


This testimonial does not constitute financial advice.

Old Mutual Life Assurance Company (SA) Limited is a licensed FSP and Life Insurer.

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