Six.
That’s how many doctors she visited before she was correctly diagnosed.
Chloe Roberts, 23, has lupus.
Lupus is an autoimmune disease that causes a person’s immune system to attack healthy cells. Its symptoms are complex, hence diagnosis is difficult.
In late 2019, Chloe started getting aches in her lower body. At first, she brushed it off as fatigue from dance rehearsals. Then she started losing weight, then hair, then sleep.
“(The pain) was so bad that I couldn’t sleep,” Chloe tells The Pride.
Despite visiting three hospitals over five months, the results were always the same.
“It’s probably a muscle tear. Don’t worry, it’ll go away,” Chloe recounts what a doctor told her during her first hospital visit.
But by her third visit, despite reassurances, Chloe started to feel uneasy.
It was her first year’s exams at ITE, however, so Chloe pushed her worry and pain away for a month while she crammed.
But her struggles persisted. Chloe started losing more hair, and more terrifyingly, her ability to walk. She remembers limping to school as her lower body started throbbing with pain.
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After completing her exams in March 2020, Chloe was hospitalised for a week on Tramadol, a strong painkiller, but the symptoms persisted. It was only when she went to the hospital a sixth time a month later that she finally got her answer.
“I was at A&E from 1am to 5am,” she says, “and I was about to get sent home again.”
As she was about to leave, the doctors told her that she had kidney complications, a possible symptom of lupus. Chloe remembers being in hospital for a month, enduring countless tests, laying in the claustrophobic MRI machine for hours, before getting confirmation.
But it came at the worst possible time.
It was April 2020, the beginning of the Covid-19 lockdown.
For most of us, lockdown is a distant memory, filled with feelings of unease, of being trapped, jumping at the slightest sneeze. But for Chloe, it was much worse.
Lupus is a chronic condition. There is no cure.
“Lockdown made my experience hell”
Being hospitalised during lockdown was tough. In times like these, support is crucial, but Chloe had to choose — only one family member was allowed with her as restrictions tightened.
“It felt very lonely. I was demoralised and unmotivated,” she says. “I didn’t want to listen to music, which I used to love. I didn’t want to read; I was just stoning.”
Days became a blur. For a month, she would wake up after barely sleeping and go through the motions, staring into space.
Yet for all her boredom, it got worse after she was discharged.
“I think it was the hardest after I got out of the hospital,” she says.
Finding equilibrium
Those with lupus need multiple medications for treatment.
Chloe, who was by then in her last year in ITE, started putting on weight from the high dosages. Her face puffed up. Her insecurity acted up, and she covered herself with baggy clothes when she went to school.
The prescriptions also messed with her mental health. Previously outgoing and extroverted, Chloe started getting constant anxiety attacks. Talking to people, so natural before, became terrifying.
Worst of all, she started getting mental fatigue. She couldn’t understand anything in class, which made her lag behind. This common symptom, also called lupus fog, presents in various ways, like inattentiveness and forgetfulness.
The changes hit Chloe hard.
“For a period of time, I felt very dumb,” she sighs, “I know I shouldn’t have been so hard on myself because some things are beyond my control; but it affected me.”
Standing by her
However, she is thankful to her teachers who took extra time with her, coaching her in one-to-one sessions.
Chloe is particularly grateful to Ms Lena and Ms Geraldine, her dance CCA teachers in ITE. As the hospital bills started piling up, Chloe’s family struggled financially. Ms G (as Chloe calls her) sent her snack baskets in hospital and Ms Lena delivered groceries to her doorstep after she was discharged.
Chloe’s family and friends were also her pillar of support.
Covid restrictions meant that patients were allowed only one visitor (a direct relative) for up to two hours, twice a day.
Her mum came with home-cooked meals. Her friends couldn’t visit, but their FaceTime sessions cheered her up no end, even if it was for a few minutes.
At home, Chloe remembers sleepless nights, suffering panic attacks.
When her parents Andrew and Violy, or sister Chanel (who is two years older) heard her crying at night, they would comfort her.
“On their end, It was hard too,” she says, sniffling, “but they were willing to sacrifice their time to take care of me and get through it.”
Dealing with insensitive comments
Nowadays, things are getting better for Chloe. Her symptoms are more manageable now, which means less medication and fewer side effects. But she still gets stung on occasion by careless remarks.
Lupus is often called “the invisible disease”. Since symptoms vary so much from person to person, someone whose symptoms are not as severe may appear as if everything is fine, when in actuality, they might be dealing with chronic fatigue, joint aches, pain and swelling.
Once, during practice, a dance member asked her: “Wow, why are your feet so swollen, like your face?”
The hurtful remark caught her off guard. The room fell silent and the person was roundly scolded. They apologised, but the damage was done.
Even though Chloe was used to such comments, such body shaming incidents perpetuated her self-consciousness.
Comments like “I can tell that you gained weight on your face”, or “I can tell that you are chubbier” stabbed at her, and she confesses that she was often glad to wear face masks during Covid to veil her insecurities.
Inspiration from pop stars
Coming to terms with her condition was not easy. It took her a year to get better, physically and mentally, says Chloe, now a third year media student at Nanyang Polytechnic.
She attributes part of this mental recovery from looking at the stars — literally.
“Looking at performers with lupus, it amazes me. They have to perform live on stage; be in the limelight constantly, even when symptoms like fatigue persist,” she says.
“That is why I’m still pursuing my passion in dance. Because if they can do it, then I can do it too.”
One celebrity diagnosed with lupus is Selena Gomez, recently the most-followed woman on Instagram with 400 million followers. The pop star has been openly advocating for lupus awareness since her diagnosis in 2015.
Chloe is inspired by how the singer has dealt with (and is still dealing with) her share of body shaming.
Selena Gomez opens up about weight gain side effects from her Lupus medication on TikTok Live due to body-shaming comments.
— Pop Base (@PopBase) February 16, 2023
Last month, Selena held a TikTok Live to address comments about her weight, talking about her lupus medication and how it causes her weight to fluctuate. Before ending the stream, the Kill Em With Kindness singer addressed haters, saying “…go away, because honestly, I don’t believe in shaming people for their body or anything.”
Accepting lupus and spreading awareness
It is such stories from celebs and from people from all walks of life that has helped Chloe feel less lonely living with lupus.
It also inspired Chloe to start her own blog, where she details her experience with lupus, hoping to help others going through the same thing. Every year, she also donates to the Lupus Research Alliance.
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In April 2021, she wrote: “As much as I do feel a bit upset over my condition from time to time, this traumatic yet distressing experience has allowed me to heal.”
“I believe it was the people around me who had given me the strength to push on. I believe that every life is precious and I hope to be able to reach out to other patients (not just lupus patients) who had to go through many downs, just like me, to receive a proper diagnosis.”
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