Living with lupus: Stacy Peters shares her story


By Isanella Patoir

Following an unexpected diagnosis of lupus, 26-year-old entrepreneur and young professional, Stacy Peters has discovered a new outlook on life.

It all started three years ago when Peters could not get out of bed and was in immense pain for hours. Like many others living with lupus, her road to diagnosis was long and painful.

Lupus is a lifelong auto-immune disease that can damage any part of the body. Having lupus means that your body’s immune system is unable to tell the difference between healthy cells, tissues, or organs and as a result, it attacks everything.

“It was July of 2020; I remember it like it was yesterday, it was during the pandemic and I was at home quarantining and I remember waking up one morning and not being able to move my muscles, my hands, my legs and the only thing I could move was my neck.

“My joints were all stiffened and swollen,” Peters said during an interview with the News Room on Thursday.

Naturally, after waking up unable to move, Peters was scared and terrified because, in addition to not knowing what was wrong, she was also in excruciating pain.

Stacy Peters during her interview with the News Room (Photo: News Room/May 11, 2023)

“I ended up visiting the hospital to try and figure out what was wrong with me.

“That is where the journey basically began; it was a series of doctors’ visits, physical exams, medical testing, a lot of emergency visits, a lot of pain and I was even misdiagnosed twice before my official diagnosis,” she recalled.

Eventually, in October 2020, she saw an internal medicine specialist and there, things began to change.

“Dr. Gansham Singh, he was the one that diagnosed me with lupus, he asked if I ever heard about the disease. At the time, I didn’t know a lot of persons who had the disease and he suspected that I had it but he needed to confirm with a test,” Peters said.

That test had to be done overseas and it was several weeks before the results returned negative. However, Stacy began her treatment because she had all of the symptoms of lupus.

“A year later, I retested and that test actually came back positive.

“I was relieved,” the young woman said, and even though it wasn’t the best news for her, “it was good news knowing that I know what was wrong.”

Currently, there is no cure for lupus so Peters is on treatment to help manage her symptoms.

“Now, I am in a better position to manage the disease, I know when a flare is coming on and I can tell when certain things will happen. I take my medication, I rest when I have to, I go out when I have to and I exercise when I have to.”

After three years, her hospital visits are less frequent but lupus still has an impact on her social and physical life. Learning how to alter her daily life in order to manage this unpredictable condition is one of the most difficult things for Peters.

Lupus can be isolating and so, Peters has built a community for persons living with the disease to share their stories.

“I want to do more because I know information is limited out there on the disease and I have made it a personal mission to help raise awareness in Guyana and this part of the world. I started a Facebook page and every opportunity I get, I talk to someone about the disease,” Peters said.

After she experienced a skin rash, Stacy was left with scars and she also lost some of her hair

“By creating that platform, persons reach out and say: ‘Hey, I have lupus as well and this is what I have been going through.’

“We have a lot of messages and we make recommendations to our doctors and the type of medication and food we use and the lifestyle changes.”

She is also hoping to educate people on how to treat persons living with the disease with kindness. After she experienced a skin rash – a common sign of lupus – Peters was left with scars on the majority of her skin.

“The rash went away but the scars remain so my body is spotted like a leopard, so I was scared to go outside but it was something I had to accept that this was my skin now.

“But it was not an easy journey, because when I had to go outside, persons would stare and you would see this scornful look on their faces and they didn’t want to sit next to you because they thought it was contagious,” Peters recalled.

She also started to lose her hair.

“Persons would make comments about it. But I accepted who I was and now I am less caring of what people think about the colour of my skin and I look at my scars as my battle scars and they remind me every day that I am strong.”

Despite living with an incurable disease, Peters is hopeful and has remained positive throughout her journey.

“There are fears of lupus affecting major organs like our hearts and kidneys but there is hope when we stick to our treatment plan and adjust to the lifestyle, dieting and exercising and getting enough rest as well as support from our family and friends, we can have some semblance of a normal life.”

Even though her life is not what she imagined it, Peters still finds life enjoyable and with her friends and family supporting her, she is never alone. She now manages her own clothing store online, having completed her second degree in international relations in 2022.

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