By Marissa Gonzalez, Bridgette Picou, and Katie Willingham
Members of The Well Project's Community Advisory Board attended, presented, and reported their perspectives on the virtual US Conference on HIV/AIDS, December 2 - 3, 2021. We've compiled their takeaways from the gathering into several multi-author topical articles. Read on for summaries of presentations related to quality of life for women and other people living with HIV – and check out all The Well Project's coverage of the US's largest HIV community convening.
Table of Contents
- Woman-Led Research on Stigma in Women of Color Living with HIV
- Supporting Parents' Informed Infant-Feeding Decision-Making
- U Equals U and Quality of Life
- Self-Care, Healing, and Growth for Women Across the Gender Spectrum
Woman-Led Research on Stigma in Women of Color Living with HIV
Bridgette Picou
One of the heavily discussed topics in different forms at USCHA this year was stigma. It's unsurprising as stigma continues to be a pervasive detriment to those living with HIV and our community as a whole. I attended the session "Internalized HIV-Related Stigma in Women of Color Obtaining Care" because I believe internalized stigma is a silent killer. We often keep our internalized stigma to ourselves out of shame, a sense that we are alone in our feelings, and this impression we have that no one wants to hear us. This internal shame erodes our resilience, kills our joy, and eventually can lead to negative health outcomes.
The session was presented by Mariam Davtyan, PhD, MPH, whom I have met before. I have found her to be calm and compassionate and she asks insightful, inclusive questions, so I was interested in her take on stigma in women of color. Her study was done with women at an HIV specialty clinic in California.
I'm going to try not to be too technical in my breakdown of her session. I don't want to just give you slides verbatim, and I couldn't do the facts and figures justice anyway. By the end of the session I felt a more emotional response to it, which I think is the more important part. However, just as a starting point, she gives us some broad definitions:
- Stigma: Social spoilage; a devalued social identity, labeling, stereotyping, separating, and status loss
- HIV-related stigma: Ungrounded, prejudicial, and discriminatory attitudes and behaviors directed towards people living with or vulnerable to HIV
- Internalized stigmas: Endorsement and incorporation of negative societal views about HIV and people living with HIV into the self-concept – characterized by feelings of self-shaming, self-blaming, and lower self-worth. The effect mechanism of internalized HIV-related stigma is through increased depression and anxiety, lower self-efficacy, and social isolation.
I would say these are more formal definitions of what all of us living with HIV have felt at some point. Made simpler, people form an opinion about those who are living with HIV based on fear and ignorance. They point fingers and words at us, making us feel separated and alone and having a negative effect on our mental and emotional health over time. Dr. Davtyan's study found that gender identity and race had effects on stigma, which is what I would anticipate. Women experienced more stigma, more severe stigma, and more internalized stigma than men. People of trans experience faced the most stigma across all groups. People of color experienced more stigma than whites; and there was more stigma among Latinx people vs. African Americans.
Dr. Davtyan discussed those comparisons between groups based on her other work, but I feel like I should point out demographic information because it's important to note: This was a study by a woman about women. Representation matters. This study was composed of women of color - 76 percent of whom identified as Latinx and 24 percent who identified as African American. The questionnaire measured self-exclusion, self-acceptance, and health-seeking items (behaviors).
The rest of the presentation was the breakdown of method and impact: the who, what, where, and why. Call-outs I want to make sure I touch on include a term I had never heard but that made immediate sense: protective silence. We don't disclose for safety, whether it is emotional or physical. Stigma produces a reduced ability to negotiate safer sex – i.e., not asking a partner to wear a condom for fear of being thought of as dirty or unclean, or being judged.
It should be noted that this study was done in a health facility that caters to people living with HIV, so it should be a safe space to get care without worrying about stigma. I pointed out that the medical home is often the oasis in the storm, but clearly it can be a place of judgment too. Work needs to be done to address stigma in this and other settings to help prevent loss to care and negative community impact.
Marital status and cultural components were factored into the questionnaire. In the presence of internalized stigma there is reduced resiliency, reduced access to and retention in care, increased mental/emotional difficulties (PTSD, depression, anxiety), suboptimal HIV drug adherence, and reduced virologic suppression. If you have never seen a study in its entirety, it's actually really interesting to review the methods, questions, and processes used to reach the conclusion.
What I want to express is my overall feelings about internal stigma and where the session left me. I asked if women who had a support framework did better with stigma and as you would guess, that is the case. Those who were employed and had higher than a high school diploma did better as well, likely due to increased access to resources and increased social skills. Dr. Davtyan also mentioned specific tools like self-concept and self-reliance, combined with personal mastery and mindfulness and fortifying your resources.
For me, broken down to basic terms, it's this: Your sense of self vs stigma. What do I mean? I have an affirmation (one of many): "When you know who you are, they cannot tell you who you are not." The things Dr. Davtyan mentioned tie back into that. Bolster your resources, your resiliencies – those things that feed your spirit and help you get up and face each day, whatever that is for you. For me it's self-care, including self-assessment, to stay in a healthy mental space. It's a social circle that I believe in and that believes in me. It's removing myself from places and people that are negative or that don't grow or serve me in some way. Addressing my trauma and trauma responses to stay in a place of joy. There is a difference between believing you deserve to be happy and knowing you deserve to be happy. Practicing mindfulness to remain in a challenging moment and identify how that moment makes me feel and what triggered that feeling so I don't keep repeating the same mistakes – or, conversely, what feels good in a moment so I can return to it for peace.
The reality is that stigma hurts. It has physical implications in addition to the mental ones. We all need to focus on building ourselves and our sisters up to ensure none of us is broken by it. Something I said about another session: Women are resilient, but not indestructible. Yet, if we find a way to bolster our resiliencies and resources, we fortify our strength to go on. Above all, you are not a three- or four-letter acronym. You are so much more!
Be well. You matter.
Supporting Parents' Informed Infant-Feeding Decision-Making
Marissa Gonzalez
From a young, tender age, I was told having children would be extremely difficult due to my PCOS (polycystic ovary syndrome) diagnosis. I grew up having the belief that I would never have children, let alone breastfeed one. Because of what I was told over 20 years ago, I've gone through life saying I don't want children. I can admit, when it came to anything "childbearing focused," I tended to ignore it, because I was afraid to face the fact that these topics aren't my reality. But attending the session "Elevating Critical Conversations on Breastfeeding and HIV" to support not only The Well Project but tribe member Ci Ci, who has become a faraway sister, was inevitable.
Because of those very beliefs in my head, I had a hard time connecting with the topic – until Ci Ci made one very small but huge statement, and that's where the waterworks began.
"My body is not toxic."
You see, very much like PCOS, when it comes to HIV and breastfeeding we are led to believe that we CAN'T. We can't give birth; we can't nourish a part of us that is supposed to help strengthen this precious gift that just came from our bodies.
When it comes to HIV and breastfeeding, it is important to understand that above all else, YOU have the right to make the decision on what your motherhood journey will look like, from treatment during trimesters, to delivery, to how you will nourish your baby once birthed.
The panelists did an amazing job expressing the importance of a number of things, but in my opinion these were the most important:
- Peer support can help you see that although fear of other people's opinions may be high, their opinions often come from a lack of education – and a lack of research on this topic done in the US which, once we have some, would hopefully prove what we know so far through experiences in the community and evidence from abroad
- Advocating for yourself is important during these processes – it's essential that your voice is not only heard, but supported and encouraged
- Having a team of medical professionals who support your decision can give you more confidence to believe what you are doing isn't wrong
When it comes to HIV and breastfeeding, it's been recommended for years in most parts of the world for women living with HIV who are taking effective HIV drugs – and there have not been major negative impacts to their babies from doing so. So where is the gap? The need for more research and provider engagement. These are key components to creating informed "believers" out of those who are negative thinkers and doubters – no matter their profession. We have seen physical proof that breastfeeding is not harmful when the mother is engaged in care and her viral load is undetectable.
So if you are reading this: Even if just with your voice, you have the power to fight for change, for inclusion, for studies to take place to hopefully prove what we know. I hope that if it is your desire to be a mother, after reading this your fears have gone, the myths are dispelled, and you feel equipped with the necessary tools to seek support for having not only a healthy experience, but a positive and empowered experience to become that mom you've dreamed of being – and, if you choose, to nourish that beautiful gift you call child from the fluid that was made for them.
U Equals U and Quality of Life
Katie Willingham
The U=U (Undetectable Equals Untransmittable) message communicates simply and clearly about HIV treatment as prevention – a scientific fact that you can have confidence in, and an invaluable tool for reaching the estimated 400,000 people in the US who, for whatever reason, have not yet reached viral suppression (a very low viral load, defined in the US as less than 200 copies of HIV per milliliter on a blood test).
The breakfast session "The Journey to 400,000: Leaving No One Behind" covered a US public health initiative of the Prevention Access Campaign (the original creators of U=U) to increase viral suppression among the estimated 400,000 people in the US living with HIV who are not yet at that point. Though not everyone may be able to achieve full viral suppression, we must not give up on as many as we can possibly help.
Quality of life is very important for people living with HIV; it's something many of us felt we were robbed of when we received our diagnosis. But quality of life is still very much achievable even while living with HIV. There are many factors that contribute to our sense of quality of life, such as bodily integrity and autonomy, sense of safety, feeling of self-worth, having good life structure, having a sense of belonging, and more. Your sense of quality of life is personal, but is also collective as we don't live our lives alone; the environment we live in also contributes to our quality of life. Do you who are reading this article have an environment that supports your quality of life?
So how does viral suppression play a part in your quality of life? Because for all people, good health is key for a rich quality of life, not only for your physical health, but for your mental and sexual/reproductive health as well. Viral suppression is an important element to achieving that good health. But it's important to note that viral suppression is not an endpoint; it's an entry point. It's just part of an incredible, productive, and dignified life while living with HIV.
There are a number of structural and systemic barriers to viral suppression and achieving a rich quality of life, such as:
- limited or no access to affordable health care
- inadequate or unsafe housing
- financial insecurity
- racism and anti-Blackness
- classism
- homophobia, transphobia, and all other forms of LGBTQ discrimination; and just
- overall stigma and discrimination
"The Journey to 400,000" will reach people who are not yet virally suppressed through education, outreach, and awareness campaigns; advocacy work; strengthening the HIV workforce; and treatment and testing initiatives. Good public policy and advocacy can support the work of highlighting the relationship between viral suppression and quality of life. But no policy should be made about our lives without the meaningful involvement of people living HIV (MIPA). MIPA, when properly utilized, means centering the voices of people living with HIV with particular attention toward those most affected by experiences like lack of diversity, marginalization, and lack of resources. The kind of meaningful change that "The Journey to 400,000" strives to make will not be possible without the involvement of people who live with this condition.
Engaging in policy and advocacy work can seem intimidating, but it's so important that we affirmatively commit to improving the quality of life for people living with HIV. This work must be carried out at all levels of government: federal, state AND local (as it's said, "All politics are local" – so don't leave them out). We can engage our legislators at AIDSWatch and other meetings with congressional and federal administration officials; we can join state and local planning committees and also use social and traditional media. Remember, we all can have a role in developing policy agendas and engaging in advocacy, around U=U and beyond.
We have the tools needed to change the game and end this epidemic, and U=U is a major part of that toolbox. May we never fail to share this life-changing information with the world, but especially for those living with HIV.
Self-Care, Healing, and Growth for Women Across the Gender Spectrum
Marissa Gonzalez
I will start by saying that the presenters in "Healing, Empathy, Relationships, Boundaries: Securing Your Bag (HERBS)" came to SLAY. This session focused on best practices for self-care and ways that we can help others prioritize their needs as well. To my surprise, it was a group of all women, which made me feel right at home! There was a particular focus on women of trans experience, but the information was relevant to all of us. Regardless of how we identify – and this is not to disregard how you identify – we are all human, and we are all women who face many of the same struggles and emotions in both our personal and professional lives.
There were several tips shared, but these were key components to this presentation:
- HEALING: to understand ways to deal or cope though past and present situations. It's about understanding the importance of decompressing, boundaries, empathizing, understanding and practicing self-care.
- EMPATHY: to have compassion for the experiences of others, in part because it can help to form a bond between yourself and others.
- RELATIONSHIPS: surrounding yourself with people who light up when you walk into a room. To keep close individuals who bring positive energy, who uplift and support.
- BOUNDARIES: having an understanding of your history and the willingness to learn helps you to see what boundaries you need to set in place, and the importance of realizing how they play a role in your mental, physical, and emotional peace.
- SECURE YOUR BAG: "Ask for money and you get advice; but if you ask for advice, you get money twice!" This means, if you are given money, you likely may not know how to keep it flowing aside from asking for it, and not everyone will say yes. However, if you learn the skills – something that can't be taken away – the money will continue to flow as long as you put your skills to work.
My perspective of the session caused me to look at the definition of an herb. It is defined as "a seed-bearing plant whose aerial parts do not persist above ground at the end of the growing season." This really got me thinking, as I am on a personal development journey. There is a theory about being a farmer and planting a seed. For that seed to grow it takes time, it must be watered, it must be nourished, and in time you still see the growth once it has gone through the appropriate stages.
So you see, HERBS is about ensuring that you tap into every part of yourself that needs to be addressed: understanding what no longer serves you, and having the tools to help plant your seeds and to see your seeds sprout.
