FINLAND: Embracing a tumultuous existence full of glorious ups and disheartening downs after being diagnosed with a highly stigmatized disease like HIV, Maya Viecili, spoke to the Transcontinental Times to share her journey as a survivor of chronic AIDS.
The interview was orchestrated in an informal, conversational manner, mirroring much of Maya’s jovial and optimistic aura, not to disregard an illness as grave as AIDS but to showcase that one does not become the disease. One is remembered for her memories, her indelible mark on people’s lives.
Maya is an exceptionally special mother of one, aged 41 in physical years, but is as jubilant and vivacious as a youthful 27-year-old.
As a stay-at-home buddy who enjoys playing video games, making new friends with cats and cows, and being crazy over caffeinated beverages, cakes, and “pretty much every cheese in the world”, this spunky mother takes the phrase ‘carpe diem’ way too seriously.
Maya’s undying spirit
Maya’s life came crashing down in February 2020 when she was diagnosed with AIDS, which transpired way beyond its chronic last stages, so that urgent treatment, bodily rejection of that treatment, and eventually death was more than inevitable.
But Maya’s life turned around when she was notified that her body was responding well to treatment, with high chances of survival.
When Maya began her journey with HIV, a stigmatized disease that only drew social ostracization, she felt alienated.
Following her near-death experience with the deadly disease, she took the reign in her hands and began to study voraciously into the disease.
“I started to educate myself about HIV, and it became a passion,” she recalls. Maya didn’t feel like hiding it anymore”and came public with her diagnosis.
Her passionate engagement with an unspoken and untouched disease she has herself been prey to allowed her to meet people from all over the globe who shared similar stories.
The foggy mess of unfounded claims, prejudices, and misconceptions began to clear when she began to talk openly about the disease with clarity, rationality, and scientific logic.
When questioned about her inspiration to step up and put herself out there in the highly volatile mess of ignorance and medical truth, she realized that the “biggest problem with HIV is actually the stigma”.
”This stigma is based on wrong and outdated information, taboos, lack of education, and, of course, cultural standards,” which prompted Maya to vocalize her confidence and much-researched knowledge to bring dignity to those who live in fear and shame with this disease.
According to Maya, the misconceptions stem from the scientific dogmas of the 80s and 90s, leading up to recent times when people still believe that HIV and AIDS are the same things.
HIV or Human Immunodeficiency Virus is transmitted from person to person via unprotected sex, blood (sharing of needles and syringes), and from mother to child through pregnancy and birth.
AIDS is Acquired Immunodeficiency Syndrome, meaning untreated HIV causes AIDS. AIDS happens when HIV debilitates the body by hampering its immunity.
The second misconception is that affected people are a huge threat to society. But what people don’t know is that “a person living with HIV under regular treatment gets to have the viral load so suppressed that it becomes undetectable to the traditional laboratory tests, and then becomes untransmittable, which means that this person does not transmit HIV anymore through sex, or pregnancy and birth.”
One of the most ignominious misconceptions about this disease is perhaps that those affected have a “sketchy lifestyle” with unprotected, ‘irresponsible’ and ‘neglectful’ sex with countless sexual partners.
But Maya says this disease has no face or a certain questionable “social circle”; “there’s no way to know if someone is infected with the virus, without a test.”
To clear the air around HIV and AIDS, there must be a collective effort to engage in scientifically accurate, rational, and unbiased conversations with survivors and affected alike to bring a sense of normalcy and dignity to the people.
“Once people in general start talking more and talking the truth about HIV, testing will become more natural, allowing those who got infected to get treatment and stop the infection chain,” hopes Maya.
Towards the conclusion of the interview, Maya expressed her deep gratitude to HIV advocates around the world who are changing the narrative, nurturing normalcy, education, and unprejudiced clarity in society to establish that HIV and AIDS are just another virus, not yet curable but can be treated with the right dosage, therapy, and empathy.
“We have overcome the problem, and we can help others do the same,” is her go-to motto.
Maya hopes to diligently cater to the urgent needs of this struggling community, to bring sensitivity and awareness to the disease.
“A decade from now, I want to look back and see that I helped make a difference.”
The interview ended with a generous nod to her social media accounts to help other people across the globe. She operates two Instagram accounts, one in Portuguese (@mayaviecili) and another in English (@positivelytalkwithmaya).
A note of warning, which she did not miss: “I am not a doctor, and I do not give medical advice of any sort.”