For the first 10 months, doctors misdiagnosed her as having other diseases with similar symptoms. Shen was “kind of happy” when she finally had her official lupus diagnosis.
“I know it sounds weird,” she admits, but having been dragged down for so long without knowing why was difficult.
“Something was obviously very wrong with me, but there was no treatment.”
Lupus symptoms may be mild to life-threatening
With lupus, the immune system attacks healthy tissues for no obvious reason, causing inflammation; it may be in the joints, skin, kidneys, blood, brain, heart or lungs. This can trigger a range of symptoms – they may be mild, or lead to life-threatening complications.
The most obvious symptom of Lupus is a butterfly-shaped facial rash across the cheeks; even with that, the disease can still be difficult to diagnose.
The rash does not occur in all cases and other lupus symptoms – fatigue, fever, and muscle and joint pain – are also common in other diseases.
Hong Kong-based rheumatologist Dr Tommy Cheung says each lupus case is different, making diagnosis very difficult.
No cure, but medications help
While there is no cure, certain medications can help manage the symptoms. Steroids are usually prescribed early on to control multiple symptoms, Cheung says.
A relatively new injectable medication, Belimumab, is now being used in lupus treatment, Cheung says. It is more effective and can reduce steroid use, but is also several times more expensive than traditional oral medications.
Unpredictable flare-ups, drug side effects
For Shen, this ailment means a lifelong struggle to have a normal life, with unexpected flare-ups and the side effects of medications.
“As a make-up artist, my work can be very physically demanding, standing for over 10 hours or carrying heavy gear,” she says. “Sometimes I’m actually in pain, even with the medications.”
It’s pretty annoying and so painful. The first two times I couldn’t go to work
“It’s pretty annoying and so painful. The first two times I couldn’t go to work, but now I’m … having really strong medication.”
Mental health suffers
“In Hong Kong, the awareness of lupus is so low that a lot of people have never heard of it, or think it’s only a skin disease,” she said.
Doctors will never prioritise issues like hair loss, a swollen face, gaining weight or acne breakouts. These kinds of things are not going to directly kill you
Before setting up her own business, Shen worked in the retail cosmetics industry. At the time, she spent two weeks in hospital because of a flare-up, and she had to face other people’s doubts about the severity of her illness.
“You start hearing people saying things like, ‘Oh, I think she’s pretending to be sick. I don’t think she looks sick’,” Shen says.
“The problem is that we often don’t look that sick. No one will believe that I’m in so much pain if I don’t look sick.”
Taking back control – and spreading awareness
Being able to make up her own face reminds Shen that she is stronger than the illness.
“I can take control of how I want to look and present myself in front of others,” she writes on her website. When she started to make herself up as therapy, “the helplessness and loneliness started to fade away”.
To help more people understand the disease, and to support those in the lupus community, Shen and two other lupus patients set up a Facebook page in 2017, which later developed into the non-profit organisation My Lupus Diary.
Earlier this month, to mark Lupus Awareness Month, Shen and the group organised a fashion show featuring lupus patients as models, who shared their experience of living with the disease.
Shen says she hoped it would address the self-image issues that many lupus sufferers face.
“We try to empower the patients to not be defined by lupus,” she adds. Despite having the illness, “you can still live beautifully, inside and outside.”
Sharing experiences builds bonds
Brianne Chan, a model for the show in her 30s who has lived with lupus since 2002, said she once stopped treatment as she was so depressed over having the illness.
“I felt like life was just too hard, too awful. Swallowing those pills each day made me feel labelled as a patient, someone different from everyone else. Taking medication every day was even more painful than death itself,” says Chan.
She also experienced profound loneliness: she could not find support groups like those for cancer patients, which left her feeling helpless.
For lupus patients, maybe you’ll find the next day you wake up not able to get out of bed. It … changed my lifestyle and mentality a little
Only after she met some important people in her life and some fellow patients did she begin to reconsider having treatment.
“I used to feel insecure about the parts of myself that I didn’t find attractive. But seeing the other models at today’s fashion show, it dawned on me that we all share the same vulnerabilities. It’s as if I’ve found a sense of companionship. At least I’m not so lonely now,” Chan said after the fashion show.
New perspective
“You feel like what you’re doing, or what you have, is not like a ‘must’. Maybe you should stop taking things – like being able to get up and go to work – for granted,” she said.
“For lupus patients, maybe you’ll find the next day you wake up not able to get out of bed. It … changed my lifestyle and mentality a little – like a Yolo thing: you only live once.”
