Don’t be fooled; a teenager’s life is hard! Between trying to understand themselves and finding where they fit in, the journey is a treacherous one.
It got more difficult for Umeko Chin, however, as soon as she was diagnosed with lupus.
Now, almost 23 years old, Chin looks back at her life and recounts how living with systemic lupus erythematosus has affected her mindset.
“I was living in Turks (and Caicos Islands) and then I moved to Montego Bay. I was starting high school in the ninth grade and I started getting sick, like in November, close to my birthday,” Chin explained, “I was throwing up, and my aunt took me to the doctor, and they were saying maybe it was gas or meningitis or something. Then it got worse, because I would not stop throwing up. So I had to go to the hospital and one doctor told me, ‘You know I think its lupus, but we’re going to double-check’,” she recounted.
According to Chin, she visited a kidney specialist and after running some tests, he concluded that she had lupus and that nothing was wrong with her. She said, however, that during this time she was on medication called prednisone, which is an anti-inflammatory medication, that also suppresses the immune system.
“So we went to another doctor and got another opinion, because I had the butterfly rash and some other tests were done. The results came back that it was lupus,” Chin said.
With the lack of information about the illness, Chin did not know that lupus was now a part of her lifestyle; she told The Gleaner that she thought that it was like dengue, and would go away after a while.
“I was all of a sudden lactose-intolerant; I couldn’t go in the sun, couldn’t play with my friends anymore. I was always tired. I didn’t understand, and I was on medicines that would make my face huge and bumpy,” Chin recollected.
She explained that she did not complete the 10th grade, as she had another flare-up from lupus and had to return to her father in Turks and Caicos. Surprisingly, she was getting better. Then something else happened.
“I remember that I had passed out one night, and was like, ‘Oh my God, dad, it’s happening again,’ and he said, ‘Don’t worry about it’. I was on a jet heading back to Jamaica and that’s when I met my rheumatologist, Dr Keisha Maloney, and she said, ‘Yes, it is lupus and I will take good care of you,’ and she did,” Chin said.
While in Jamaica, Chin had to go back to school and because of the medications she was taking, her body changed and she was always drowsy; and the fact that she hadn’t been in school for months, there were whispers and rumours swirling. Chin described this experience as “hell”.
“One time they had a group project and nobody chose me, because I heard some people say, ‘Oh, she is a waste-man, all she do is sleep in class,’ and it was hurtful,” Chin admitted, “But I didn’t care; I just went home and I studied, because CXCs were coming up. I still had ‘flares’, but I still got straight-A profile in that same class where they called me a waste-man.”
She shared how proud she was of her accomplishments and the fact that she got to graduate after being told she would not have, because she missed much of grade 10.
The same resilience she exuded in high school has stuck with Chin and pushed her into being a part of the Miss Jamaica Universe pageant 2019, where she was a finalist.
“Lupus made me stronger as an individual, especially when I entered the Miss Universe pageant. I was so afraid because people were saying, ‘You nah go get no sleep, and this and that; you sure you can manage that?’” Chin explained.
However, her determination to prove her naysayers wrong kept her going. She added that being in the pageant also taught her a few lessons.
“I initially did the pageant for lupus, because I needed people to see that with lupus you can still do anything, but you have to know your limits. I was tired and I was stressed, but I learnt to manage it; even if it’s two minutes of sleep, I took it,” Chin said proudly.
She has had to learn a lot about lupus on her own and the support needed, especially when she experiences flares. Chin has been living on her own since about 17 or 18. As a result, Google has become her best friend, and she has found different ways to cope.
Chin is enrolled at The University of the West Indies Western Jamaica Campus, where she is reading for a degree in tourism management. Due to another flare-up after the pageant, she is unable to continue her studies until January.