For months, people living with HIV/AIDS have found counsel and advice through the advocate work of Shelly Turner, a social worker at Equality Ohio. Shelley herself is a person living with HIV, so perhaps there’s none better to do this work than Shelly.
She recently sat down to a Zoom meeting with Clara Matonhodze Strode to discuss her experience as a black woman living with HIV in Ohio. Shelley believes normalizing HIV and modernizing HIV laws can help stop the stigma.
Thank you, Shelley, for agreeing to talk with me today. I understand you have a pretty busy schedule, given how long it has taken us to get together.
Yes, very busy. I got a meeting at 3:30p, and then I got another client at 5 pm.
We’ll make sure we have a great talk in 30 mins. I will have to channel my inner journalist to hit all the relevant spots. Thank you, Shelley, for agreeing to do this. I’ll ask the questions, and when we publish, we will publish verbatim. How long have you been HIV-positive, Shelley?
In October, it will be 23 years. Yes, October 23 years.
OK – so around 1997 is when you contracted the virus. What emotions did you feel when you learned that? Can you walk me through how that felt?
I was utterly shocked, mad, and stunned! Surprised that I let this happen, Mad at myself and stunned to the point of disbelief. I drove to my close friend’s house and told her. she was shocked but supportive. For the first two to three years, I tried to ignore it. I sure in the heck did not take my medicine the way I was supposed to take it because every time I took a pill, it reminded me that I was HIV positive, and I did not want to deal with that
How did you tell your family? How did you transition from being mad to OK and then telling your family? Was that immediate, or did that take time?
Well, to tell the truth, I was really not into telling people my status, not even my family. I have a huge family, and they are very protective of me. I told my biological sister, and she took it upon herself to tell everyone like she was going thru it. I think she just wanted to make me look bad but fooled her. My family once they found out was very supportive even to this day. I guess I stop being mad about being positive, once I took ownership of the situation.
Yes, it took time, I mean years. But I am very lucky to have great family and friends
Now I did not come out to my friends until last year. Last year is when I told most of my friends and came out publicly.
You told your friends last year after living with HIV for more than 20 years? What took you so long?
Well, I would have to say, my daughters. I have three beautiful daughters, and I just did not want them to be harassed or teased at school because of me. They all three are very protective of their mother, and I just wanted them to enjoy school (their youth) and not have to worry about me. But as they are older now, and I felt that I want to do more as an activist. So when this job position (career change) came along, I talked it over with them, to see how they felt, they were like, if you’re OK, we’re OK. After that, I start telling my friends. My friends were shocked, I even have one say “Wow! I would have never know! And my response was, what is HIV supposed to look like, especially after being diagnosed over 20 + years ago.
Isn’t that something? You lived an everyday life without people knowing. If people had known, that would probably have been the thing that became defining for you. What do you think about that?
I’m not sure how my friends would have reacted if I told them of my statues back then, I just felt at that time, it was nobody’s business. I think if I would have told people in the 90’s they may have reacted a little differently, due to the education and images at the time were not at their best. But I really like telling people now, only to see their faces of shock. I even have people tell me, “you don’t look like your HIV positive”, and my response is always, “what is a person living HIV supposed to look like?” I think it is a lot easier to educate and announce, or should I say own your HIV positive status
So that brings me to my next question about misconceptions about living with HIV. Given the experience you have told me, I wonder what you think would have been the misconceptions If they had known.
Probably some of the misconceptions would be I was dirty, slept with a lot of men. I only say this because I have been around conversations when HIV has come up regarding another person. Usually, unnoticed I would be defending the HIV-positive person. I was harder on myself than anyone could have been. I was conscious about my menstrual period, if I cut myself, or even scrapped my leg. When the girl was younger, I used to wash my clothes separate from theirs, no reason just a lack of knowledge. There is also a misconception among our youth, regarding HIV and the seriousness of it, they think if they contract HIV, that they will only have to take one pill to get the virus under control to get to an undetectable status, that is not the case for all people
Did you notice a change with your friends before they knew versus after you told them? Did they change?
No. No. Not at all.
But you probably think at the time, 20 years ago, if you had told them that might have changed?
Maybe but it’s all how far HIV education has come. But I would hear, little comments they would say. Comments about other people, like she must be in a hospital somewhere. And like my one girlfriend, she’s like every year, She gets tested and so does a lot of educated black women I hang around. I get a lot of sexual health questions along with HIV questions
You pointed out that stigmatization didn’t affect you in your family, but has stigmatization ever affected your romantic relationships?
Yes and no. Yes, sometimes when I was younger, I had a killer body and thought I was the stuff. I would tell guys and they really would not believe me. They really thought I was saying it, so they would not keep asking me for sex, but I was being honest and upfront. And even some were OK with it, I would let them know what we had to do for protection, and they respected what I told them. I used to be married for 11 years, and it did not bother him, at all.. no one bit. Now I’ve been in a serious relationship for over 4 years, and he’s more than fine with it. I have also found out that most HIV-positive women have a partner that is negative. I have not come across any couples that both of them are HIV positive.
You mentioned briefly living with HIV and having AIDS. Can you talk about the differences between the two? I don’t think most people understand what the difference is.
HIV is a virus that you have. If it’s uncontrollable and you don’t take care of it. It can lead to AIDS by letting other viruses and diseases infect you. That’s what you die of AIDS, not HIV. You die of complications of AIDS, not HIV. When I first started, I was I wasn’t taking my med and I would break out in hives – that was my body saying – hey. Take care of yourself! I’m taking my medicine on a daily basis for the last 10 years I’ve never been hospitalized and have been undetectable since
What do you think we should happen to help other women and girls who are living with HIV that might not have had as positive an experience as you? What’s the one thing that we are not doing as a society that could help others?
We’re not communicating with black women, and we need Black women to have information that I did not have. That’s why I have made it my mission to educate women on their sexual health and empower them to take more control of their sexual health discussions.
Is there an optimum time to have this conversation? A lot of after-school programs. Go in there and talk to them cause they’re gonna talk. That’s how information is transferred like even if I go into a group and there are only three women in there, I know it’s gonna go around. You want to go back and tell your friends to know OK.
Shelley, thank you so much for speaking with me. I realize we are out of time. Is there anything you want to communicate that we have not addressed?
Testing, get tested – OK, I like it. Once this law gets passed, I think a lot of people would be out there getting tested. I think our numbers are going to increase for the people wanting to know their status because right now people don’t know for fear of criminalization.
Shelley Turner is an advocate for PLHIV. She is also a Social Worker at Equitas Health and a Steering Committee Member of the Ohio Health Modernization Movement.