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Many folks with HIV stay silent about their status. The reaction to Charlie Sheen's story shows why.

Many people say the hardest part of living with HIV is the stigma. Here's some easy ways to treat HIV-positive people with compassion.

This morning, actor Charlie Sheen made a huge announcement: He's HIV-positive.

Photo by MIchael Buckner/Getty Images.


The move comes after the Internet exploded yesterday with speculation about the actor's status after the National Enquirer promised a "bombshell world exclusive" about the actor's private life.

All totally valid criticisms of Sheen aside, no one deserves to have their personal information shared without their permission. Sheen probably wouldn't even have shared his status without the threat of extortion hanging over his head, because there is still so much stigma and so many misconceptions surrounding an HIV diagnosis. But now that he's come forward, it's significant that he was able to share his story in his words before anyone else could.

Individuals with HIV should be able to live without shame and with the freedom to be open about their lived experiences.

Reactions to Sheen's announcement show we still have a long way to go to overcome stigma about the virus.

Sheen shares that he was diagnosed about four years ago. Why did he keep it secret for so long? Uh, the cover of this magazine might give a hint.

Photo via National Enquirer.

Treating someone's HIV status — a private medical condition that is likely irrelevant to everyone who'll read it — as a sensationalist gossip topic isn't just gross, it's wrong. Not to mention: HIV and AIDS aren't interchangeable diseases — to proclaim, on the cover of a magazine no less, that Charlie Sheen not wanting to disclose his HIV diagnosis is an "AIDS COVER-UP" wildly misrepresents what an HIV diagnosis means in 2015. Media reactions like this are why he and millions of other Americans are hesitant to disclose their HIV status.

Misconceptions and stigma about HIV play a large factor in why many with the diagnosis stay silent, often forever.

“We're finding, despite the fact that we've been living with this disease for 30 years, that the greatest challenge we're facing is stigma," David Furnish, chairman of the Elton John AIDS Foundation, said in an interview with The Advocate. "[That's] the biggest hurdle we have to overcome."

Stigma against HIV-positive people is a large reason why discrimination is so rampant. Loss of housing, employment, and close relationships is common for people with HIV or AIDS in ways that many folks with other life-threatening conditions don't face.


Retired NBA player Magic Johnson publicly disclosed his HIV-positive status in 1991. Since then, he's become an outspoken advocate for safer sex and HIV/AIDS prevention. Photo by Stephen Dunn/Getty Images.

Here's what you need to know about HIV:

Stigma is a tricky thing that many people don't realize influences how they treat someone — because it can seem so normal. Remembering these facts will help you destigmatize HIV and AIDS when you find yourself in conversations about it in the real world.

1. HIV and AIDS are not interchangeable.

HIV stands for human immunodeficiency virus, which is a tiny organism in the body.

AIDS (acquired immunodeficiency syndrome) refers to the condition one can get after HIV completely compromises their immune system.

An individual can have HIV for many years and never get AIDS. Only a doctor can make the call whether someone has AIDS. Thanks to progress in medical care, people in the U.S. who take antiviral treatments often never get AIDS.

2. The risks of contracting HIV through everyday contact like handholding or sharing a swimming pool is minimal.

HIV is not spread through the air, casual touch, tears, sweat, or saliva. So it's OK to use the same bathroom, eating utensils, and water fountain. In the U.S., the most common way people are infected is through penetrative sex, which is why it's important to use condoms.

But it's not just through sexual activity. There are reasons to be extra cautious if, say, you have a cut on your hand and you help your friend with HIV bandage a cut on her hand. HIV is transmitted through certain body fluids, like blood, coming into contact with the bloodstream, damaged tissue, or a mucous membrane like the mouth.

3. HIV is not a punishment.

No one deserves to get HIV. It is not a condemnation from God or some sort of punishment for certain acts that others may not approve of. When you read your magazines in the checkout aisle of the grocery store, don't buy into all the correlations between Charlie Sheen's history of being a "womanizer" or his relationships with sex workers meant to imply that his HIV infection is a punishment for that. It only takes one bad needle, one broken condom, or one partner to transmit the disease.

If you cite Sheen's wild past and say he got what he deserved, that assumption reflects on all people who have HIV, no matter how careful they were in their lives. It reinforces the myth that HIV-positive people are being punished for bad decisions, a stigma that they face every day.

4. People of all genders and sexual orientations can get HIV.

For a long time, HIV was seen as something only gay and bisexual men should worry about. But according to the CDC, 23% of people with HIV are women. Of women who were newly infected, 84% were from heterosexual contact.

While most folks get HIV from sexual contact, remember that there are other ways people get infected, like being born with it or through a blood transfusion. In general, it's just best not to assume how they got HIV. It's irrelevant at this point anyway, right?

5. You can't tell whether someone is HIV-positive by how they look.

Just because someone doesn't "look sick" doesn't mean they're HIV-negative. Many HIV-positive people can be symptom-free for years before discovering they are infected. That's why it's so important to get tested regularly. You'll be able to get early medical intervention and prevent inadvertently infecting someone.

Actor Danny Pintauro, best known for his role as Jonathan Bower on the TV show "Who's the Boss" as a child, came out as HIV-positive this year. Photo by Matt Winkelmeyer/Getty Images.

Here's how to handle conversations about HIV and AIDS in real life to stop stigma in its tracks:

Be mindful of your language when talking about HIV. A lot of common terms can reinforce stigma. For example, the term "clean" when referring to negative HIV status implies that someone who is HIV-positive is dirty.

Treat a person respectfully when they disclose their status. Be compassionate in your response and make sure to respect their privacy. Their disclosure is not consent to being an open book about sexual history, medical treatment, or how they contracted the virus. And just because they disclose their status to you doesn't mean they're giving you permission to reveal it to everyone else, too.

Do not speculate on or disclose someone's HIV status without permission. Basically, don't do what the Enquirer did with Charlie Sheen.

Get tested. Knowledge is power. Visit this link to find a place near you. A lot of places offer free testing, which can be completed in a few minutes!



Olympic gold medalist Greg Louganis tested positive for HIV in 1988. He is an advocate for LGBT and people diagnosed with HIV/AIDS. Photo by Jason Kempin/Getty Images for The Point Foundation.

Educating yourself about HIV just doesn't make you more knowledgeable, it makes you a real force in reducing HIV stigma.

HIV stigma is very real — and it has dangerous consequences. It keeps people from getting treatment and but also getting the care and support from others that they (all of us?) need. Many studies have found there are significant public health risks because of stigma.

We're probably never going to persuade everyone to treat Charlie Sheen's diagnosis with respect and dignity or prevent them from making stupid TIGER BLOOD jokes. But the lessons we learn from how we talk about Sheen's announcement have real-world repercussions on non-famous people living with HIV stigma every day.

If we work hard to reveal the reality — that living with HIV isn't a death sentence, that there's nothing to fear from HIV-positive individuals — we can create a world where folks can divulge their status on their own terms. It'll be a better, safer world for everyone.

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

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It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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