‘I thought I was gonna die’.
Advocate calls for J’cans to support HIV-positive persons along rough journey
JOAN STEPHEN has been living with HIV for two decades. The 59-year-old activist and mother of seven epitomises strength and wears a radiant smile as she champions the call to end the stigma and discrimination against people who have the virus.
“I don’t see HIV as a virus. My HIV is ‘Hope. Inspire. Vision’. I won’t let HIV define me or stop me from accomplishing what I want in life,” she boldly declared of the virus that causes AIDS.
Stephen spoke candidly with The Gleaner about the last 20 years of her life, after a church service two Sundays ago in recognition of World AIDS Day, which is being observed today.
She learned that she was HIV-positive during a medical examination for an overseas job opportunity in the hotel industry.
Of the 12 applicants, she was the only one who did not leave Jamaica on the programme.
“I was distraught. I felt down [and] depressed because I got an opportunity and it was no longer there. Years have gone by and I can look back and smile, because I’m still here,” said a reflective Stephen.
She disclosed her status to her family the very same day she found out and recalled that her mom burst out singing One Day at a
Time, Sweet Jesus. For her, that was a reminder of how she would have to deal with HIV.
Following her diagnosis, the doctor had requested that her husband, whom she had recently married, and their son, who was born before the wedding, also get tested.
“When we went back for the results, the doctor said there was good news and bad news,” she said, adding that her son had tested negative, but her husband was positive.
She exited the room while her husband spoke with the doctor, and upon her return, he expressed that he was sorry.
“I said, ‘Sorry for what?’He shook his head and said, ‘When we get home, we will have a discussion,’” she recalled.
His family had been of the view that she had passed on the virus to her husband since she had six children before the marriage. But then came the revelation. “He told them that they were not to be upset with his wife because I’m not the one who gave it to him, and that he knew where he got it from,” she said.
Stephen recalled that her late husband had been experiencing some worrying symptoms, but she did not suspect that it was HIV.
“He used to cough and throw up a lot. He couldn’t keep down anything. I used to say to him that he was not supposed to have a cough for more than a week. Had it not been for the opportunity to do the hotel programme, I would not have known,” she told The Gleaner.
She described the first few years living with the virus as “devastating”.
“I thought I was gonna die, ... but one thing I’m grateful for is my family. They have been there for me…They have supported me in every way. They have never left me, regardless of the fact that they know that I am positive. They stand by me 100 per cent,”said Stephen.
She is grateful to God for sustaining her life and being a tower of strength in the most difficult periods.
“At work, when people found out that I was positive, they used to go about and talk it without me telling them, but I eventually got the courage to educate them about what it is like when you share something that is not your responsibility to share,” she said.
She said that her husband passed away a year after the diagnosis as he did not make the necessary lifestyle changes until he began to lose weight rapidly. On his deathbed, he revealed how he had contracted the virus.
Since publicly declaring her status, Stephen has been a role model for the estimated 32,000 Jamaicans living with HIV.
This she did initially with Greater Involvement for People Living with HIV and AIDS within the Ministry of Health and Wellness and the National Family Planning Board.
After a period of unemployment, she found a new purpose as a community facilitator with the Jamaican Network of Seropositives (JN+), which has more than 1,000 members and advocates for the rights and concerns of people living with HIV. This role has allowed her to interact with others living with HIV, help them in various ways, and making recommendations for further intervention.
On today’s World AIDS Day, Stephen is urging Jamaicans to love each other.
“We have to take our ARVs (antiretrovirals) because it ’s important. It helps to bring the [viral load] down, but without more support from people, it’s challenging,” she said.