Living with Lupus and Sjogren's - Enna Tan


Enna standing on a stand-up paddle board in water under a clear blue sky
Enna on a stand-up paddle board

“A blessing that came out of my autoimmune conditions is that my parents agreed to move in with my family.” Enna Tan was diagnosed with both lupus and Sjogren's in 2015, in her early 40s. For her, it started with fainting spells after a full meal. She dismissed these incidents and attributed them to her low blood pressure. The trigger to see a doctor came when her husband found her unconscious on the floor, next to a sharp edge. She realized that if she had hit the sharp edge on her head, she would have died. That began her journey to find out the cause of her fainting spells.

It wasn’t a straightforward journey. She first saw a GP, who referred her to a neurologist for a MRI to diagnose the cause of her fainting spells. A blood test was ordered to test for thyroid as she had low tolerance for cold temperatures. There were no conclusions for the MRI and blood test for thyroid, but she had other heightened markers which led to a referral to a rheumatologist. Enna’s rheumatologist did a Schirmer tear test to measure the dryness of her eyes, which turned out to be 0 on one side and 2 for the other (normal range is 10). Although she experienced dry eyes, she always thought it was a result of her staring at the laptop for a prolonged period of time. And if she had fatigue or joint pain, she thought that she was lethargic, and will do some exercise.

Looking back, she realized that there had been some tell-tale signs of her autoimmune diseases. As a teenager, she had the ‘butterfly rash’ on her face – a sign associated with lupus. But as a young active teenager who was always under the sun, she put it down to sunburn. Her mum would also bring her to facials and bought her many expensive skin moisturizers. When she turned 40 years old, the rash became more severe and started having tinnitus – which she attributed to hormonal changes. During the first 6 months of her diagnosis, she stopped doing her usual routine of exercises as she thought it would be better for her joint pain and also used eye drops even though she did not experience any pain from having dry eyes. Enna was advised by her ENT specialist to wear hearing aids and resisted against the advice as she did not want her ears to become dependent on the hearing aids. But she realized that she would have to accept her autoimmune conditions, and resume life as much as she could.

“If this is how you have been managing your symptoms, don’t start telling yourself you have an illness, and be defeated in your mind. You have to accept that there is no cure and its about managing symptoms. Continue what had worked for you.” was how her rheumatologist encouraged her to cope with her autoimmune conditions.

Her only major change after her diagnosis was that her parents agreed to move in with her after she jokingly told them that they may have to take care of her instead. Other than that, she takes her medications and tries to avoid being overly stressed. She also will not have too full of a meal as her autoimmune conditions had damaged the nerve of the digestive system. When she is too full, the damaged nerve sends a signal to the brain to shut down, causing her to faint.

Enna continues with her fitness routine of running and would love to continue playing netball and tennis once COVID-19 restrictions are eased.

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