ONE year after being diagnosed with lupus at 21 and initially fearing that it meant an early end to her life, ‘lupus warrior’ Shenae Robinson is living every day with a smile on her face, despite the pain she suffers due to the chronic illness.

“Having lupus is an experience in patience and it is an experience of loving my body when it really hates me. Lupus is like when your body decides you are not going to have a good day today, and it’s about learning to manage that and learning to be patient with yourself and understanding your limitations, and also understanding that this is not the end of your life and this is not a defining characteristic of you,” the 22-year-old said.

According to the National Health Fund (NHF), lupus is a long-term disease that causes the body’s immune system — which normally helps protect the body from infection and disease — to attack healthy cells. This attack causes inflammation, and in some cases permanent tissue damage, which can be widespread — affecting the skin, joints, heart, lung, kidneys, circulating blood cells, and brain. It affects multiple organs in the body and can be quite painful.

It is difficult to diagnose, may range from mild to severe and has no known cause, NHF said.

Detailing her struggles in a testimonial at the Lupus Foundation of Jamaica Awareness Month launch last Wednesday, she said although she was not diagnosed until last year, her mother suspected she had the autoimmune disease from as early as 13 years old due to the physical challenges with which she struggled.

“How I finally found out I had lupus was an accident. The doctor thought I already knew, and she was recommending a lupus treatment for me…but to her and also my surprise, it was the first time I was [being] diagnosed with lupus despite all the challenges over the years. Even the summer before I was diagnosed, I was taking painkillers basically to have a shower, and my mom was very concerned,” Robinson said.

Robinson told the Jamaica Observer that when she was diagnosed with systemic lupus erythematosus, doctors contemplated hospitalisation.

“So when we ended up getting tested for ANA [antinuclear antibodies], it was so bad that they put me on 36 milligrams of steroids, which anyone who has lupus would know that amount is insane because even the pharmacist asked me if I was sure that was how much. They almost hospitalised me, but they decided to just put me on the steroids and send me home to figure out if I would need more treatment or if I would need basically lupus’ version of chemotherapy, which would be some steroid therapy,” she recounted.

However, despite what she has had to endure physically, the young woman said the hardest part of her journey is people’s lack of patience due to their limited knowledge of lupus and how it can affect the body.

“People always say I do not look sick, and people tend to not have so much patience when you do not look sick,” she told the Sunday Observer. “But even though I may not look sick, I have to explain that despite looking fabulous, I am feeling pain in my entire body and I am literally about to pass out…”

As she navigates each day and learns how to be patient with her body, Robinson admits that she is worried about her future.

“Being 22 with lupus, it’s a bit easier to be happy despite the challenges. However, I imagine [that] when I am 50 and the arthritis gets worse, it will not be as funny. So it’s been a process to navigate that. Now, too, you are starting meaningful relationships and you have to warn the person from the start about the illness and to consider if I will even be able to have children and how the challenges will affect the entire process, so going through the rest of my life is going to teach me so much more patience,” she explained.

However, regaining her smile, Robinson said she usually uses humour to cope with the pain.

“I joke about it constantly, and it’s about having friends that understand those jokes because it can get a little bit dark, so that definitely helps, and having a super tight support system. My sister is always saying if I need a kidney I should let her know and I might actually need one, so I try to keep a close relationship with my siblings just in case I might need their kidneys in the future,” she said.

Robinson expressed gratitude to the Lupus Foundation of Jamaica for their support. She is working with the team to raise awareness about the autoimmune disease among the younger population.

The disease is found to be more common among females ages 15 to 44, NHF said.

In the meantime, president of the Lupus Foundation of Jamaica Dr Desiree Tulloch-Reid is urging more Jamaicans to get onboard with the fight against lupus.

“This year’s theme, ‘Empowering lives, inspiring hope’, reminds us of the onward work that needs to be done. And we made great progress, but there are still too many Jamaicans affected by lupus who face daily battles — battles with their health…with their finances and the societal stigma — so use this month to amplify your voices and to advocate for one another,” she encouraged.

Approximately, 6,000 Jamaicans are currently living with lupus, with around five million people worldwide affected by the chronic illness.