Lupus warrior wants peer support after May

Across the globe, the month of May is celebrated as Lupus Awareness Month. On May 10, the world places extra emphasis on the autoimmune disease, recognising International Lupus Day. While some recognition is better than none, Jamaican lupus warrior Chantel Bunting hopes that people living with the disease will speak up more often, even after the awareness month ends. Sharing her journey, the native Kingstonian said her diagnosis came in 2021 after a bout with COVID-19.

“I had gotten COVID in 2020 and it was really bad for me. But of course, it was bad for a lot of persons, so I thought, ‘Okay, I’m just going through all the symptoms.’ I remember specifically one day I couldn’t breathe, I was like ‘No, I definitely have to go see a doctor.’”

Initially, Bunting’s concerns were written off as long-term symptoms of the coronavirus. However, after realising that her energy level was constantly depleted, she decided to visit her doctor once again. In June, she was diagnosed with systemic lupus erythematosus. This specific form of the autoimmune disease attacks the immune system, leaving the body unable to protect itself and, in many cases, attacking its own tissue.

Lupus flare-ups often involve joint pains, fevers, fatigue, rashes, hair loss, sores, changes in colour in the fingers and toes, swollen glands, swelling in the legs or around the eyes, chest inflammation, headaches, dizziness, depression, confusion, and seizures.

“I remember seeing the word ‘lupus’, then I remembered that my grandfather passed from lupus, so, of course, I took a moment to cry ‘cause I realised that this is bad.”

Thinking back on the early days of her diagnosis, Bunting said her primary emotion was “more so fear, because, of course, I had seen him (her granddad) in his last couple of months before he passed. And I just remembered [that] because he had lupus, where it affects your skin, he was bleeding a lot; and I just remember the agony that he went through, and then I was like, I don’t want this to be a case for me.”

She continued, “I was experiencing brain fog, and at that time I was in school, so you can just imagine how challenging that was. I wouldn’t remember where I put things or what I studied. I started having numbness in my hands, so I would drop my phone a lot [and] anything in my hand that I had for too long. [I also had] numbness in my feet and this stiffness, so I couldn’t walk. I started frequenting the emergency room.”

Describing her journey as a “roller coaster”, she said it is difficult to cope with the mental toll that the ailment places on you.

“There are good days, I must say,”she began, “A lot of persons will talk about the bad days, but you do have good days; and I think what works for me is understanding that on my good days, I try to accomplish as much as I can. When my energy is high, I try to get my cleaning done and any errands that I have to do, because when you have bad days you’ll be in bed all day.”

She continued, “You want to have a career and you want to socialise, but then you also have to remember that you’re different. A lot of persons will look at you and say, ‘but you look fine’; but I’m really tired. So it’s like every day you have to wake up and put on almost like a mask.”

While there is a Lupus Foundation of Jamaica, there is little awareness on the autoimmune disease year-round. A few years ago, through relentless advocacy, lupus survivor Lanesa Downs influenced the Government to amend the list of covered illnesses under the National Health Fund (NHF) to include lupus.

While this was a giant step for the ailment, Bunting is hoping for more peer support to keep their plight alive.

“Unfortunately, I don’t see a lot (of awareness) from just what I’ve seen on social media. Most of the posts have been from the US, so I definitely think there can be more awareness, especially locally. I think we should first take responsibility that we don’t publicise it as much as we should, because at the end of the day, we are the ones that are going through this journey. More can be done.”

While there is work to be done, Bunting says her future feels hopeful again.

“I think, mentally, I was in a really bad place two years ago, where I wasn’t hopeful and couldn’t see the light. Especially when you meet people, it was always, ‘I know someone who passed away.’ It was never, ‘Yeah, I know someone who’s living a great life’. I wasn’t very hopeful, but now, with all the changes I’ve made and the fact that I am around people who are encouraging and uplifting, I definitely see where I can live a healthy life.”

shanel.lemmie@gleanerjm.com