Silent No More: The Perspective of Heterosexual Men Living with HIV

Silent No More: The Perspective of Heterosexual Men Living with HIV

by Temitope Creppy, Senior, Howard University

“I was refused treatment because I refused to say I was homosexual.” These are the words of a 50-year-old African-American man diagnosed with HIV who was wrongly discriminated against and denied medical treatment due to stigma that persists in the healthcare environment. Healthcare professionals doubted his relationship with his wife, and people in his daily life still consider him homosexual because he lives with HIV. Unfortunately, across the country this is the reality of a majority of heterosexual men who live with HIV and experience stigma on a day-to-day basis. A Howard University workgroup named Positive EntreEmpowerment Heterosexual Men’s Workgroup and their associated Straight and Positive support group, support heterosexual men living with HIV and combating the stigma they face on a day-to-day basis. The workgroup consists of primarily men from around the country, largely from Cleveland, Ohio, Texas, and Florida ranging from those who have been living with HIV for several decades to recently diagnosed individuals. The group is inclusive of all racial and socioeconomic backgrounds.

As a federal work-study student working at Howard University Hospital, I was assigned to listen to a seminar called, The Power of Peer Support: Breaking the Chains of Stigma Together as We Age with HIV. This was the first time I was honestly exposed to the need for awareness around HIV, and the false misinformation that grew from stigma, and lack of knowledge on HIV. Stigma, when associated with HIV, another medical condition, mental illness, or disability, prevents a person from seeking evaluation and treatment, disclosing the diagnosis to those most likely to provide support, and following treatment guidelines. Health-related stigma destroys human dignity. Stigma within the Black community has been extremely prevalent due to misinformation and medical mistrust. A prominent example of historical medical mistrust dates back to the Tuskegee Syphilis Experiments where about 400 African-American men were unethically denied treatment for syphilis. Going forward, this led to lower healthcare satisfaction, skepticism about medication and medical care, and low participation in clinical trials within the black community. The HIV/AIDS epidemic began no less than a decade later.

Through the seminar and my other interactions with the Positive EntreEmpowerment group, the men’s voices echoed the various forms of isolation, depression, hurt, and confusion they felt when first being diagnosed. It wasn’t until joining the group and being able to share their experiences that a sense of comfort, empowerment, and confidence began to build. The genuineness and enthusiastic nature of the group started to shine through. They instructed the audience about the need for more conferences to build awareness around stigma and to end stigma. They also emphasized that support groups like these can symbolically break the bonds of HIV. The most important part was to treat each other as individuals no matter their background.

Under Dr. Sohail Rana and Mrs. Patrica Houston of the Pediatric Hematology/HIV Research Unit at Howard University Hospital, I collaborated with the Positive EntreEmpowerment Heterosexual Men’s Workgroup. Inspired by their session, I wanted to hear more about HIV within the Black community and the stigma faced by heterosexual men living with HIV. After meeting with Derrick Robinson, founder of Straight and Positive support group, I gained an abundance of wisdom from his life experiences and the leadership he demonstrates as the workgroup’s leader. Even though I had an understanding of stigma before, my time with the group allowed me to gain insight into the lack of representation of heterosexual men within these conversations and initiatives, not only with HIV but sexual-transmitted diseases (STDS) in general. Robinson wanted to express that they are not looking to silence other groups living with HIV, but to shed light on the exclusion of heterosexual men, the most underrepresented demographic in terms of stories and treatment development and promotion. “Our community as a whole is disproportionately affected by HIV. Black men are not included in the research and constantly shut out of prevention initiatives, and we are one of the fastest rising demographics being affected… How can we have a dialogue without being seen as excluding other demographics” said Robinson. He went on to talk about how very few forums have heterosexual Black men as a speakers. PREP (pre-exposure prophylaxis- medicine for people at risk for HIV take to prevent getting HIV from sex or injection drug use) commercials rarely show straight men, and the isolation of the Church and family spaces has made it hard for men to come forward with all the negative perceptions that surround it.

Alberto Perez Bermúdez, 53, is a Heterosexual Hispanic man within the group who is a community leader living with HIV since the age of 18. He views the workgroup as a place where men can come and talk about what they’re going through in their personal lives. “I’m doing God’s work, where I’m not going to give up easily, I want my words to be shared so people can see the reality and hopefully find inspiration or comfort in our stories.”

As a future healthcare professional, I strongly believe stigma directed at heterosexual men living with HIV needs to be completely addressed through channels of community empowerment, mobilization, funding, and a change in the healthcare culture surrounding STDs. As a young Black male, this topic had me doing a lot of reflection on the ways sexual health was presented to me in my upbringing. Growing up as a male there is a certain pressure to dive right into sex, including positive reinforcement young boys receive from having multiple partners. However, nobody speaks on the ramifications that can occur from this outlook and way of living. Before researching this topic and speaking with the amazing men of the Positive EntreEmpowerment Heterosexual Men’s Workgroup, I had little to no knowledge of HIV. But I know that the work that Mr. Robinson and others do can reach the targeted audience and touch the lives of many people, especially Black men, the same way their messages stuck with me.

The author, 2nd from left, with members of Postitive EntreEmpowerment, 2023 International Conference on Stigma.

Members of Positive EntreEmpowerment with Dr. Sohail Rana, 2022 International Conference on Stigma.

Many 2023 ICS Sessions Available

Please CLICK HERE or the button to the right to view replay of sessions from the 2023 International Conference on Stigma.

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CLICK HERE to apply for Scholarships. Full Travel Scholarship applications have closed. You may still apply for Virtual Scholarships or In-person Registration fees only scholarships.

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Zero HIV Stigma Day

Stigma is defined by Webster’s Dictionary as: a set of negative and unfair beliefs that a society or group of people have about something. In the more than four decades of the HIV Pandemic, the medical, scientific and communities most impacted by HIV have made incredible strides; moving us from what was once death sentence, to now a manageable chronic condition. That progress has been unequal across race, gender identity, sexual orientation, socioeconomic status and geographic location due to several factors but one of the primary culprits remains from the earliest days of the HIV pandemic, HIV-related stigma.

Fueled by fear, ignorance, and poor messaging, it serves as a perfect vehicle to further perpetuate racism, sexism, homophobia, and transphobia. In 2023, however, we still see stigma spoken about as an abstract issue as opposed to a root cause of a persistent pandemic.

When the idea for Zero HIV Stigma Day was brought to us at the International Association of Providers of AIDS Care (IAPAC) by NAZ (an HIV and Sexual Health Charity in London) to create a day of global action uniting government, communities, Non-governmental Organizations, and influential individuals we saw an opportunity to educate and activate not only the populations of individuals living with HIV, but the whole global community, as HIV-related stigma impacts us all. It keeps individuals from seeking testing, treatment, and prevention services. It affects interpersonal relationships. People living with HIV globally in many cases are not safe to disclose their status to loved ones for fear of rejection. It is perpetuated by institutional policies in many countries that will terminate workers due to their status. Additionally in many places, individuals can face prosecution for non-disclosure without actual transmission creating an additional layer of fear. The most insidious of all the manifestations of stigma is self, or internalized stigma. These outside messages of fear, rejection and harmful policies can often be ingested by individuals leading to isolation, mental health challenges such as depression, anxiety and falling out of care.

The inaugural year’s theme of Human First aimed to serve as a rally cry. In a world where hate is being legislated in substitution for good governance, where we see a constant dehumanization of communities most impacted by HIV it felt important to remind the world, but most importantly ourselves, that before we are people living with HIV we are Human First. It also inspired the short film of the same name allowing us to elevate the stories of six individuals personal and professional experiences with HIV stigma.

The global response to this year’s Zero HIV Stigma Day was overwhelming. I’m not sure I’ve fully processed how a little idea, mixed with some big dreams and a lot of hard work resulted in a Global Day of Action uniting communities, government, NGOs, and advocates to stand up to HIV stigma. While there were many lessons learned, I believe that July 21st, 2023, is the beginning of a movement.

I’m incredibly grateful to everyone who worked to make the day happen, IAPAC’s CEO Dr. José Zuniga, our global partners, the cast of Human First, those who participated all over the globe. This day is truly a love letter to every person living with HIV who deserves to be treated and seen as Human First.

Kalvin Pugh, IAPAC

Call for Art Closing Soon!

We welcome your paintings, drawings, poetry, video, photos, essays, and any other art forms. At least three top selections will receive prizes. CLICK HERE to submit. Deadline October 13, 2023.

 

StoryTIME: Telling Is My Empowerment- Enroll Today!

We are excited to announce that our program to fight stigma for youth age 18 to 29 years with HIV, “StoryTIME” is still open for new enrollments! Mentorship and leadership and advocacy skills training included. Want to learn more? CLICK HERE

New Blog…Peer Support

Since becoming public with my HIV status just this last fall, I find myself in a place of discovery.  What does my life look like without keeping HIV a secret?  How does the vulnerability uncovered become an asset to my gifts sharing in a world in much need of safe vulnerability?  How do I extend to others while not lessening self care of less stimulation and information from social media?  Aging with HIV- what is the best support for my own mental health?

I am grateful to Howard University, Who Can You tell? program, The Well Wisdom Project, Positive Women’s Network and more recently NAMI, “National Association for Mental Illness.  These organizations provide inspiring Peer Support. Peer Support utilizes one’s life experiences as a gift to listen and share with others hopes, dreams, loss, disappointment and despair.  Living with HIV for 20 years, I’ve done “therapy” many years of my life, and the exchange of Peer Support has been remarkable.  Peer Support is an exchange between peers with similar lived experience. These “undesirable” experiences strengthen personal resilience to be an ally for others that are experiencing difficulty.  I don’t have to have the exact experience of another to have common feelings of separateness, despair, not being enough, or without community. Peer Support holds space for another’s challenges, sees them as a worthy human being, and knows they have capacity to live life with joys and grief, and that there is hope in living a more joyful life.

I live with the grief of great loss.  To have my feelings normalized in Peer Support exchange softens my pain and is a lesson that one cannot escape loss when we love with the courage and passion required to open our hearts to another.  Our human experience is to be endured and expressed in its wholeness. I will no longer pathologize my feelings.

My experience with Peer Support exchange connects me with others in sharing life challenges, joys, humor, and hope that encompasses a full spectrum of the human experiences and in community!  That’s what my support looks like!  In times of darkness, my Peer Support groups hold my tears and joy, inquiry and humor with an acceptance I have longed for, and feelings of belonging, wholeness and “I’m going to be ok” are strengthened.  I am not separate, alone without purpose or insignificance.  I move through darkness and return to the light I am. Connected, in community, making a difference in sharing my vulnerability and fine tuning my gifts. Peer Support exchange is a blessing in a world with heightened depression, anxiety, chaos, isolation, and less than adequate mental health resources.

I recently completed Peer to Peer support training through NAMI.  I take this 2023 step to learn new skills to be Peer support for those living with mental illness and HIV.  I embrace the opportunity of my life experience living with HIV to serve others and end HIV Stigma. To support others in seeking treatment, being in community, lessening isolation and increasing self-esteem to grow to be the best version of yourself you can be, I continue my discovery of living openly with HIV.

Positive Sunbeam

View the Photo Narrative Project!

CLICK HERE to view the 2022 International Conference on Stigma Photonarrative Project. This project was organized by the Internalized Stigma Interest Group. A big thank you to all who participated!

Roland B Scott Sickle Cell Symposium

Join us at Howard University (or virtually) on May 19, 2023 as we explore stigma, relationships, and reproductive issues, while living with sickle cell disease. Register at www.ranapediatricfund.org

 

Volunteer Instructions

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