Long-term HIV survivors reassure others: 'You are never alone'
In 1990, after Michelle Lopez left a domestic violence situation, she and her infant daughter were homeless and were both diagnosed with HIV. “If I had not found community, I truly believe I would have been dead,” remarks Michelle. Today, Michelle, a 51-year-old mother and grandmother, reminds people that “You’re not alone, you’re never going to be alone.”
While HIV can now be a long-term, manageable chronic disease for many, aging with HIV can present a unique set of challenges. Stigma is among the foremost barriers to HIV treatment, care and support. It’s common for older adults living with HIV to feel lonely and isolated. That’s why the HIV: The Long View Coalition is helping to reinvigorate the dialogue around HIV and shift the conversation toward a focus on long-term healthier living — regardless of a patient’s age at the time of diagnosis. A large part of the Coalition’s mission is dedicated to reducing stigma and helping older adults living with HIV find communities and networks of support as they navigate the challenges of living with the condition.
Ed Shaw says finding community support and reaching out to people who could help him better understand his diagnosis was so important in learning to live with HIV. Ed felt ashamed and embarrassed when he was first diagnosed; however, after talking with a healthcare provider and learning more about his condition, Ed began to feel comfortable enough to seek treatment. “The more I came to understand about HIV,” Ed says, “the less afraid I became.” Today, Ed mentors individuals living with HIV and helps connect them to resources and organizations like the ones that helped him more than two decades ago.
Kim Watson, a woman of trans experience, is also sharing her story of learning to live with HIV to help others feel comfortable talking about the condition. When Kim was in her 20s, she wished that she had someone to guide and mentor her through the challenges of living with HIV. Today, Kim takes pride in being that resource for a younger generation. “It’s so important for people impacted by HIV to feel supported,” Kim says. “And the best way to find that support is to confide in loved ones and to go out and explore your treatment options with a healthcare provider.”
Today, individuals with HIV are living longer, healthier lives than ever before. The Centers for Disease Control and Prevention estimates that there are 1.1 million adults and adolescents living with HIV in the United States. People aged 50 and over account for an estimated 47 percent of Americans living with diagnosed HIV.
As a result of this demographic shift, the community has arrived at a crossroads. It’s a time of tremendous opportunity to envision the future and develop innovative solutions that can help improve the long-term outlook for those living with HIV.
The HIV: The Long View Coalition is helping people living with HIV address some of those challenges. Established in 2016 in collaboration with Gilead Sciences, the Coalition is a forward-looking health initiative working to drive discussion and action on the long-term needs of people living with and at-risk for HIV. The Coalition is comprised of a diverse group of partner organizations that support some of the communities most heavily impacted by the HIV epidemic today. The Coalition is working to reignite the conversation around aging, long-term health and HIV.
Earlier this summer, the Long View Coalition released its Never Alone video series. The videos feature the inspiring stories of three long-term HIV survivors, each of whom shares their experiences of overcoming stigma and aging happily and healthfully while living with HIV.
While Ed, Michelle and Kim each have their own unique stories to tell, they share many common experiences and have confronted many of the same challenges. From overcoming stigma, to feeling comfortable speaking with a healthcare provider, to talking openly with loved ones, there is a lot that those living with HIV should think about. Here are some of the most important things that Ed, Michelle and Kim have learned:
* Life doesn’t stop with HIV: More people are living longer — and aging healthier — with HIV than ever before. With proper medical care and a healthy lifestyle, those impacted by HIV are able to continue living their lives and doing what they love. As Michelle puts it, “HIV is just a diagnosis.”
* Community is always there: When anyone first hears the words, “You are HIV positive,” it’s easy to feel like no one else could possibly understand. Fortunately, that’s just not true. Whether you have a question about living with HIV, or you’re looking for additional resources, or just want to talk to someone who knows how you feel, there is a welcoming HIV community for whenever you need it. You are never alone.
* Paying it forward: If there is one thing that Ed, Michelle and Kim each emphasize again and again, it’s how thankful they are for the support they’ve received and their desire to pay it forward however they can. They each work with community advocacy organizations throughout the city to help prevent HIV, as well as mentor young people who are learning how to live with HIV. “I consider myself fortunate to be a long-term HIV survivor,” Ed says. “It’s up to people like me to pass on the knowledge and support that we’ve been given.”
To learn more about the Never Alone video series, and to hear from Ed, Michelle and Kim directly, visit http://hivthelongview.com/neveralone/.