What's It Like to Live With AIDS? Three HIV-Positive Women Share Their Stories

"The stigma surrounding HIV/AIDS is debilitating...” In honor of World AIDS Day, we'd like to introduce you to three fearless and inspiring women.
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Meet Regan Hofmann:

Regan Hoffman

“People living with HIV/AIDS haven’t done anything wrong, or different, or dirty, or derelict.”

Regan Hofmann is a 44-year-old AIDS activist living in New York City. Diagnosed with HIV at the age of 29, she currently works as the editor-in-chief of POZ Magazine, a publication for people living with HIV/AIDS.

How has your diagnosis changed you?

When I was diagnosed, I embraced something I had only previously thought about in a vague way: that we will all die someday. Considering that the end of my life might come much sooner than I thought changed the way I spent my time. I didn’t wait to tell people I loved them. I lived like every day could be my last. In the first couple of years, I exhausted myself trying to burn both ends of the candle at once to make sure I could pack as much as I could into whatever life I had left.

But when it became clear that I could possibly have a normal, full lifespan, I no longer felt I had to suck the lifeblood out of each day. I was able to relax and live life at a more normal pace. That said, I have never lost the acute appreciation for life that perhaps is best felt when you accept the fact that death is inevitable. And little things don’t bother me as much. Like when I’m in awful traffic, I just think, ‘Well, at least I’m here to experience the traffic.’ I also found new levels of courage and endurance and optimism in the face of adversity. It’s amazing what we can do when we have no choice.

How did your family and friends react to your diagnosis?

My family and friends, and their unconditional love and support of me, have been every bit as critical to my survival as the medications I take. The stigma surrounding HIV/AIDS is debilitating. People fear and misunderstand people with HIV/AIDS. No one who contracted HIV did anything wrong. They did something many other people do but were simply unlucky because when they did the same things others did, the virus was present. I often point out that people who would condemn people with HIV as morally abject should consider that what many people do to contract HIV–have unprotected sex–is something every one of our parents has done. If they hadn’t, we wouldn’t be here. People with HIV do not deserve the stigma and discrimination they face. I am so profoundly grateful that the people closest to me became educated about HIV and as a result, did not fear or judge me and that they love me–HIV and all.

How do those outside of your inner circle react when you disclose your diagnosis?

It really depends on how much they know about the virus and what it’s like to live with it. When people are properly educated, they learn that I am not a risk to their health. That helps. If people are ignorant about HIV and how it is spread, they may fear me and ostracize me as a result. After a decade and a half of living with HIV and six years of being public about my HIV status, I am no longer offended if someone is repulsed by the idea of my having HIV. If that happens, and it happens in a small percent of cases, I know they are recoiling out of fear and ignorance of the virus, and not from me personally. So I try not to see people’s rejection as anything other than a window into their own lack of clear HIV/AIDS education.

How has HIV affected your romantic relationships?

In general, dating with HIV and/or AIDS is not easy. For me, it’s even harder because I’m living openly with HIV. That means people discover this fact about me before getting to know me. And, it means that those in my life may themselves be subject to stigma and discrimination. But I think when you really love someone, nothing can stand in the way. HIV is a real litmus test. It sorts the boys from the men, and gives me insight to how seriously someone cares for me. If they’re willing to be with, and stand publicly beside, someone living with HIV, it’s often an indication of profound love and a deep and lasting connection. It also means they’re brave, strong and willing to try to change the world with me.

Do people treat you differently because you have HIV?

I don’t think people treat me that differently. My close friends and family are a little more protective perhaps about me. But there’s no real reason to be. I can do anything anyone not living with HIV can do. My immune system is healthy and strong. I like it when people ask me how I’m feeling or what my latest lab results were. We shouldn’t be afraid to talk about HIV. One interesting thing is that many of my friends ask me to talk to their kids about sex and sexual health. I wish parents would learn how healthy and valuable it is to have an open dialogue with children about sex.

What is the hardest part of living with HIV?

The hardest part of living with HIV is worrying that the drugs will someday stop working or that there will be long term side effects from the treatment or virus that we don’t yet know about. But, we’re getting really close to developing the cure, and so far, the treatment seems to work really well and I don’t have any serious impact from the treatment, so I’m full of hope. I think the other really challenging thing is having a sexually transmitted disease. It makes people so uncomfortable. It’s silly really, because HIV is sexually transmitted but it’s a disease of the immune system. And, we should become more comfortable talking about body parts and sex. Our culture uses sex to sell almost everything but heaven forbid we talk turkey about sex in a way that can save lives. That needs to change.

How often do you visit a doctor?

Four times a year for HIV/AIDS care and testing. I have been on medication since almost immediately after being diagnosed and have had no HIV-related health issues for 15 years. I occasionally go to the doctor for other things (like a bad case of poison ivy!).

What side effects do you experience from your medication?

I’ve been on medications for so long, I can’t remember what it feels like to live without them in my body. I’ve been on several different classes of drugs and different drugs within those classes over time. I take many fewer pills today (just three pills once a day) versus the 16 I used to take daily. The side effects of the drugs I’m on now are milder. I sometimes have a lack of appetite or stomach issues. Sometimes I feel fatigued. I’ve become slightly anemic. But, overall, the newer drugs are much easier to tolerate, which is good as you have to take them every single day for them to work. One of the “side effects” is the constant annoyance of having to remember to take them every day and stressing out about making sure I don’t run out and making sure I have a job, health insurance, and can afford to buy them. They’re very expensive. Keeping yourself alive with HIV costs about $12K-$25K per year in the United States.

Your biggest fear:

That I will die before I have done everything I can to eliminate HIV/AIDS from the planet.

What do you want most out of life?

To live to see all 34 million people (and counting) living with HIV have access to treatment to keep them alive, and eventually, the cure. Currently, of the 34 million people with the virus worldwide, only 6+ million are on treatment. Having 17 percent of all people with any disease access available, lifesaving treatment is wrong. Dead wrong. There are almost 850,000 Americans with HIV not on treatment.

What’s something you wish everyone knew about people who are living with AIDS?

We are you. You could be us. There is no difference. People living with HIV/AIDS haven’t done anything wrong, or different, or dirty, or derelict. We are good people, fighting for our lives who need and deserve the same support, love, care, and compassion anyone with any disease needs and gets. You can touch us, you can hold our hands. You can hug us, kiss us, share our sodas, swim in a pool with us, let us play with your children. We can sweat and cry beside you and you will be safe. We will not hurt you. But you can hurt us if you don’t take the time to understand we are not a threat. And that we don’t deserve to be left to get sick and die.

What would you tell women and girls who have just been diagnosed with HIV?

You can live a long and healthy and full life if you get into care and continue to seek medical support. You can have a baby and not pass the virus on to your child with proper treatment. You will find love and friendship. Come visit the HIV community on poz.com. We have more than 150,000 beautiful people living with HIV dating on POZ Personals. You are not alone and you will be okay if you connect to medical help and emotional support.

In which ways do you take a stand for those who have HIV or AIDS?

I decided to go public with my HIV status because I think it’s unnecessary for people living with HIV to feel ashamed or that they must hide. All people with health challenges deserve equal access to health care–and to the emotional support and compassion that are critical to their well-being and survival.

I am on the board of several AIDS organizations like amfAR, the Foundation for AIDS Research and the NAMES Project (keepers of the AIDS Memorial Quilt). I speak publicly around the world to try to combat HIV stigma, discrimination and criminalization. I educate high school and college students. I am on an advisory council for the Centers for Disease Control and Prevention and as editor-in-chief of POZ Magazine and poz.com, I write stories that reflect and protect the rights and needs of people living with HIV/AIDS. I advocate for our cause up on Capitol Hill with Congress and the federal administration, I appear in the media to discuss the issue and I wrote a book called I Have Something to Tell You ($8.97, amazon.com) that attempts to illuminate what it’s like to live with HIV. Basically, by telling my story and those of other people living with the virus I hope to demystify the disease so we can treat it–and those living with it — without hysteria.

Anything else you want to share with our readers?

There are more people living with HIV than ever before on the planet, so despite the fact that people mistakenly think AIDS is only an “African” disease, or only a gay disease, your chances for contracting HIV are statistically higher than ever before. Anyone can get HIV. One out of five Americans living with HIV doesn’t know they have it. And HIV/AIDS is the number one killer of women ages 15-44 worldwide. So, check out poz.com, find a testing site, and know your status! Knowing your status can save your life and protect others.


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9 thoughts on “What's It Like to Live With AIDS? Three HIV-Positive Women Share Their Stories

  1. rgsudul says:

    Awesome. Until there’s a cure prevention is paramount. Women need to get more comfortable with carrying their own condoms and taking control of their sexual health. My mom and I created a product so women can carry their own protection- so that they KNOW they have been stored safely, they aren’t expired or compromised in any way. They are called Just In Case compacts and we are donating 50% of our online retail sales to MTV’s Staying Alive Foundation for the month of December. We believe in what they are doing and the conversation that they are igniting with young adults. Thank you for this article and highlighting these amazing women.

  2. festivelady826 says:

    Many thanks to Betty Confidential and to these three fabulous ladies for sharing their difficult stories on this important day.
    Please believe me when I second their statements that we are your next-door neighbors, your friends, and your ministers – and we are living with HIV/AIDS and living well.
    It is ignorant and irresponsible to think because you are white and heterosexual, you cannot be infected. We should all be fighting to eradicate this disease and to educate our children.
    I do not want to make another square to add to the 94,000 that are on the quilt – and you shouldn’t either.
    And “rgsudul” – you and your mom ROCK ON!!

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