Connected by [Condition] is a Healthline feature that asks different people living with a chronic condition the same set of five questions to find out how their experiences might overlap — and how they might differ. The purpose is to find out how much connection might be shared between people living with the same condition.
It’s widely known that stigma and discrimination can negatively affect the mental health of people living with HIV. According to the
People living with HIV may also have
While living with HIV can feel isolating at times, it’s important to know that you’re not alone. Many people can live long, fulfilling lives. This achievement is partly due to major treatment advances but also an increase in support and advocacy, both from the world at large and within the HIV community itself.
Despite the many challenges they face, people with HIV continue to show resiliency. We set out to discover what connections might be shared among a group of strangers living with HIV.
We interviewed four individuals living with HIV from a variety of backgrounds using the same five questions. Each person has been living with the condition for different lengths of time — from 6 to 37 years. They hail from New York City, San Francisco, the South, and rural Maine. Some identify as straight while others identify as gay or queer. No two stories are the same.
We asked what they wish they’d known before receiving their diagnoses, what they want people to understand about HIV, what action people can take to help those with HIV, who their advocates are, and what they do for self-care.
These are their stories.
Editor’s note: These interviews have been edited for length and clarity.
Johneri’O Scott: I wish people would understand that it’s not a death sentence; it’s not 40 years ago. Medicine has gotten better, more advanced. People are more aware of the possibilities and prevention.
People contact me all the time after finding out that they have it, and I have to explain to them that they will be OK. I created the social media campaign, #IAmNotHIV [in late 2020] to make sure people get more comfortable. The stigma really creates the craziness.
Jesus Guillen: You should give the person [with HIV] a chance to speak and not assume. I cannot pass you the virus. The difference these days is, are you being treated for HIV or not?
When a dating website asks, “Would you date an HIV-positive person?” it really hurts, even after 40 years. Knowing that people wouldn’t give you a chance is painful. Even with U=U [undetectable=untransmittable], it’s still a struggle. The stigma is still so incredibly strong in and detrimental to society.
You can live a very full life, but it’s not perfect. We have so much work to do when it comes to stigma and discrimination. But we also have so many strong HIV-positive people — artists, activists, etc.! I’ve had to adjust my dreams, but they’re still there.
Zora Voyce: That it’s an immune system condition and it’s not just about sex. A lot of people associate it with getting it through sex, but we should be focusing more on how to deal with it, how to cope with the immune system effects rather than the modes of transmission.
Megan Moulton: I wish that they understood it wasn’t the plague. People think you can’t touch someone with HIV. They don’t understand how far we’ve come. It’s just a part of me; I’m just like anyone else.
The stigma of those three letters is so strong. It’s not like cancer. There’s a lot of morality attached to it. You can still love someone with HIV. People sometimes recoil, almost like a voluntary reflex.
Johneri’O Scott: Stop acting like a person with HIV is contagious. I feel like a lot of people think it’s contagious — like it’s airborne. It’s not! It’s sexually transmitted, or through needles. People act like it’s the end of the world. It all goes back to stigma.
Don’t be afraid to ask questions. If individuals stopped treating it like it’s a horrible illness, it would probably help open the door for people to share their status.
Jesus Guillen: Coming out as [HIV] positive is one of the strongest things a person can do. But aside from what other people with HIV can do, our allies can be there for us.
Send people positive reinforcement, via social media or other means. You can support someone going through a difficult time. A hug can be extremely powerful because it shows you’re not afraid of us.
The 6-feet [physical distancing] rule for COVID-19 was triggering because it reminded me of how people treated us [people with HIV].
Now it’s been 3 years with COVID, and as a result, we’re actually getting mental health care because of this [relatively new] crisis.
Meanwhile, people with HIV have been waiting for this level of care for decades. And it’s not as though we didn’t want a cure or treatment for COVID-19, but without the HIV medications that have already come along, the COVID-19 vaccines wouldn’t have been invented.
When the HIV epidemic started, it was said that it was happening to the “worst of humanity” — the homeless, the drug addicts, and the gays. When someone speaks of you that way, you have to become very strong to survive.
Whoever is diagnosed now, never forget that you have your own strength and your own coping skills.
Zora Voyce: One thing people can do is to research. Make sure you’re knowledgeable about HIV before having sex. I wish people were more educated about HIV, but it seems like people don’t want to be.
“I really feel like there’s going to be a cure in my lifetime. Now I do an injection once every other month. I started out taking three pills a day and now this! My deciding factor in changing from a pill to an injection was that taking a pill was a daily reminder that I have HIV.” — Megan Moulton
Megan Moulton: To educate themselves. To be able to educate themselves so they know. Education would be the key to less judgment, less stigma, more compassion, more love, and more care. If people really understood the condition, they would be more apt to be compassionate to someone living with it.
I told my husband on our first date, and I thought I would never hear from them again. But I did!
The most hate I’ve received has been on social media. I do miss being more vocal about HIV, but I’ve needed to take a break from it.
My HIV “Cliff’s Notes” story: I contracted it in Jamaica. I was super sick after coming home. I was passing out; I wasn’t eating. I went to the ER a few times but didn’t get any answers. Finally, I was admitted to the hospital. Then, an infectious disease doctor suggested that we do a spinal tap to check for HIV. [At such an early stage, HIV would not be detected by a blood test.] And it was positive.
The doctors sent me to Boston to see about doing a trial. They were debating if they should start me on ART [antiretroviral therapy] right away. I decided not to do the trial, but I did decide to start medication right away. That turned out to be a great decision.
I really feel like there’s going to be a cure in my lifetime. Now I do an injection once every other month. I started out taking three pills a day and now this! My deciding factor in changing from a pill to an injection was that taking a pill was a daily reminder that I have HIV.
Johneri’O Scott: I wish I had known more about prevention. Growing up, I didn’t hear much about STIs. All I heard was “get tested.” I wish I knew about
When I educate people, I tell people about all the options out there. Keep nothing off the table.
People should consider how the information they feed others will affect them.
Jesus Guillen: I wish I knew it wasn’t a death sentence. There are still places in the world where people believe that when doctors say you have 6 months to live, they think that’s it. I wish it were just that simple, that doctors didn’t say that, even back then.
I kept going, but I can’t even tell you why. I just knew I’m a stubborn Capricorn. [Laughs.] All the people who have survived all this time, we don’t know why.
I arrived in the U.S. in 1984 and was diagnosed in 1985. [Jesus explains that eventually he was able to obtain a Green Card to stay in the country and is now a citizen.]
Side note: I didn’t take medications for 15 years. I got very sick once, and then I started taking medications. Now, the rule is as soon as you know you’re positive, you should start taking the meds. Back in the day, taking a drug holiday wasn’t necessarily a bad thing. These are powerful medications. They have powerful effects.
To think that we can just take a pill and everything will be fine — that’s not necessarily the case. For example, now, instead of wasting, we’re
The mental health issues of living with HIV for a long, long time are a huge burden. I’m also cancer survivor. Chemotherapy saved me from cancer, but it screwed up my nervous system.
My suggestion is that when someone is diagnosed with HIV, they should receive mental health care immediately.
Zora Voyce: I found out I had it when I was 9 years old. My mom had my doctor tell me. They mostly focus on the [importance of the] immune system when you’re a kid. They don’t talk about the sex part.
I wish I knew that more people were going to be supportive than not. If I’m confident about having HIV, more people are going to accept it. If I accept it, then they accept it. I thought people were going to be mean, or mistreat me, but they didn’t.
When I was in middle school, I told my friends I had HIV, and they accepted it. But when I was in high school, I didn’t tell any of my friends. I only explained it once I became sexually active around the age of 17.
Usually, when I disclose my status, I explain that I can’t transmit it. People don’t really question it. The reason I think they don’t question me is because they don’t take it that seriously to question me, at least people my age. People older than me seem more on the fence, in terms of believing me and how the treatment has changed [advanced to the point of making a person with HIV undetectable].
During COVID, no one really thought about me having HIV. They were calm. Some people didn’t really wear masks around me, and it bothered me. I decided that if you’re not going to wear a mask, I’m not going to hang out with you.
Megan Moulton: I wish I had known that it literally takes one time of unprotected sex for your life to be changed forever. I feel like either I wasn’t taught, or I wasn’t paying attention. I thought I was invincible. It’s not just about getting pregnant. I don’t really ever remember school talking about it [the possibility of contracting STIs or HIV].
Shortly after I was diagnosed, I did speak in a few high schools. But then it just stopped. We do have some great organizations in Maine that help with education. It’s important to have those resources available.
I’m also on the HIV advisory committee for Maine. I think we need to get back into schools. We need to get back into educating these kids. I have a 10-year-old and a 16-year-old, and I gave my 16-year-old condoms for when she’s ready to be sexually active.
Johneri’O Scott: My boyfriend and my family and friends.
It took me a long time to talk with my family about it. I’m not going to have these discussions with people who will tear me down because they’re not as educated. Now, I can tell my support group/system. I’ve educated them, so they can have a better understanding of what it means to have HIV or an STI.
They didn’t know anything for several years. I told my mom the first day, but no one else. I just wanted her to know. I went on ART right away, and at that time, I was still living in my small hometown in South Carolina. A year later, I moved out to Charlotte and sort of broke out on my own.
I got tested because I was having rashes on my legs. I pay attention to my body. I listen to what it’s telling me. It was summertime, so I thought I was getting bug bites. Then, I saw a commercial one night about getting tested for HIV. I was also having night sweats but didn’t think anything of it. I had never been tested before, and so I thought I should, just in case.
Jesus Guillen: I’m amazed about the Latino leadership in some of these large HIV organizations. I’m amazed that they’re leading some of these groups on social media and aren’t recognized for it outside of social media. They should be.
For example, a Latino transgender friend of mine works in Tijuana at the border helping people who are kicked out of their homes. People need to know these stories.
For me, the big nonprofit organizations get millions of dollars, but the person who has a small Facebook group or whatever, doesn’t get anything. Those people are amazing. I receive questions about how to become an advocate. I often tell them, you just start. There’s not a specific recipe. But to help, you can do anything.
People that show me that they’re going to keep going, no matter the circumstances. They’ve shown me many times, that you can just keep going.
Also, my kitty, Mija. She lets me know that I’m still needed. Animals are so important and helpful for people with chronic illnesses.
Zora Voyce: My mom. She cares about my health a lot. If I need her to go to a doctor’s appointment or anything, she’ll be there for me.
Online, I get lots of positive feedback on my Instagram posts. It really does help.
Megan Moulton: My mom is probably my biggest advocate. She’s really supportive. She’s good at sharing my story. She educates people about it. My husband, my kids, my dad. I’m really lucky. All of my friends have been super supportive. I haven’t had a bad interaction outside of social media.
Johneri’O Scott: Self-care is very important, for one. People should take time for themselves — whether it’s going bowling, turning off your phone, or taking yourself on a trip.
For me, it’s just taking a good, long shower, laying down in silence, doing my devotionals, and meditating. Sometimes, listening to soothing music or doing retail therapy. Going to the barber shop, feeling fresh after. You feel so much lighter.
Jesus Guillen: Super important question. If you are also an advocate or an activist, you are even more suspectable to burnout. Any chronic illness is like a constant hammer.
For example, if I grab a feather and sweep it on your face over and over, you would go crazy. People know pain, but they don’t really think about the chronicity of it. It can be the most horrible thing, just the constancy.
Many of us live under that torture. You have to find something, anything that can distract you even for a moment. Even if it’s not great for your body (e.g., a pint of ice cream), do it!
Selfishly, being an advocate helps me. Helping others helps me. But when I need a break, I close my curtains and binge-watch TV.
The only thing they have discovered about long-term survivors is that we have survived because of our coping skills — but coping skills vary from person to person. I’m very thankful to be alive, but I also live with chronic pain and anxiety, and PTSD from witnessing so much death.
I love singing, songwriting, and living life at a slower pace. Writing a song for someone is such a beautiful connection. That’s my coping mechanism.
My mother and I live together and sharing time with her is part of my self-care. And telling my story is part of my self-care.
Zora Voyce: I’ve been rewatching “Mad Men” on Amazon Prime. I also like taking baths, doing my hair, and hanging out with friends.
Megan Moulton: It took me far too many years to learn self-care. What I have learned about myself is in the past 6 or 7 years to put myself first. I need 8 or 9 hours of sleep. I get to bed at a certain time to get that 8 or 9 hours. Food is medicine. What I eat and put in my body is a game-changer.
I also need to protect my mindset, protect my mental health. If I need to get off social media and get away from that toxic environment for a while, then that’s what I need to do.
Being with friends, getting away from things. I have to put myself and my health first. If I’m not taking care of myself, I’m a “sh*t mom” and “sh*t wife.” [Laughs.]