Living with Lupus - Angeline Q
“Living with Lupus makes me take life more seriously and I take better care of myself now because I don’t want to trouble my loved ones.”
Angeline Q was first diagnosed with SLE (Systemic Lupus Erythematosus) in 2001 at the age of 8. She shares that it was her mother and sister’s support that helped her get through the fear of this incurable illness. The first clues of lupus started with the appearance of butterfly rashes on her face, inflamed joints, unexplained bruising, increasing hair loss and unexplained fatigue as a young child. Her mother came across a newspaper article about the passing away of a lupus patient and realised that Angeline had similar symptoms. She then decided to take Angeline to the doctor to have her symptoms checked out. Angeline did not know what was happening to her until it was revealed that she was diagnosed with SLE.
During her primary school days, Angeline was very much involved in sports and was part of the school swimming and table tennis teams. However, she had to drop out due to her unusual sensitivity to sunlight, one of the common symptoms of lupus. This can trigger other symptoms such as skin rashes, itching and burning. Exposure to excessive sunlight can also cause flares in lupus, triggering symptoms such as fever, joint pains, weakness and fatigue.
Her schoolmates thought that she was weird not participating in PE and other activities. She could not join outings, camp trips, school overseas trips, and basically any activities relating to exposure to strong sunlight. When she couldn't participate in such activities, her classmates and friends started to question why she could be exempted because she looked perfectly fine, and accused her of making excuses to get out of things. Due to sun sensitivity, she also had to always shelter herself with an umbrella. As much as she would have loved to join her friends, she could not and therefore felt really left out and distant because many of these are bonding activities. Although exercise can help to reduce feelings of fatigue, strenuous activities might trigger a lupus flare-up.
Having butterfly rashes on her face due to lupus was not accepted very well at school either. Some of her classmates would spread rumours of her having an infectious disease. They would laugh and make fun of her and call her names because of the butterfly rash across her nose and cheeks. Because of this, she felt like an outcast as a child and could not understand why others would treat her this way.
Besides exposure to the sun, lupus flares can occur due to emotional stress and fatigue. Apart from often experiencing lupus flares especially after a bout of stressful exams or from work, the worst lupus flare she experienced was when she was 13. At that time, she herself had questioned why she had to take so much medicine everyday and why she could not participate in school activities when she felt perfectly fine. She then made the decision to take part in the NAPFA 2.4km run under the hot sun. This resulted in a high fever that lasted almost 3 weeks and she became so weak that she could not move or get out of bed. She had to be hospitalised and her doctor increased her usual medicine dosage.
As with all illnesses, consumption of medication according to the doctor's prescription is important. With lupus however, there are detrimental effects if prescribed medications are not taken, and Angeline had learnt that lesson the hard way. Angeline had skipped her medication for two weeks in a row when she was younger, because she had developed a great dislike towards medication as a result of having to consume so many pills all the time. Rashes then started appearing all over her body, and for an 18-year-old teenager, that was a horrifying experience. In fact, the rashes were just a mild effect of not consuming her medication, as her doctor warned that further skipping of medication would have led to kidney failure.
Apart from these incidents, Angeline also struggles with chronic pain on the joints as well as fatigue, brain fog and nausea regularly. She relies heavily on medication and painkillers to ease the pain daily. These medications were and are still like lifesavers to her. She also struggled with low self esteem and confidence throughout her teenage years, doubting that anyone could understand or accept her for the way she is. There were many moments in her life where she had suicidal thoughts, and sunk into negativity and loneliness. Luckily for her, she managed to find support in her family and friends who are always there for her. She wants to share that negative feelings are completely normal because we are only human. For Angeline, she has learned to cope with the unpredictability of the illness and has found other ways to be happy despite all the difficulties that come with lupus.
Compared to the past, Angeline has grown and learned so much about herself and her health. She understands her lupus condition better now, and works closely with her doctor to manage her health, symptoms and flares. While her condition has been stable over the past few years, she is also happier, stronger and appreciates life more now. She understands that she can’t control her illness, but she can control how she handles it. Instead of worrying about what others think about her, she is much more confident in herself and focuses on doing what she loves daily. Although a lupus flare can occur anytime and bad days still happen, she is always finding ways to make her life better despite those bad days.
Angeline is a Lingerie Designer and artist. She also spends her weekends teaching young children fine arts and painting. She hopes to use her artistic expertise to help make the world a better place to live in by spreading the love for the arts in any way possible.