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My Lived Experience as a Woman Aging With HIV

Melanie Reese

Subject Matter Expert, HIV Aging
Technical Expert Panel
Health Resources and Services Administration
Baltimore, Maryland

Melanie Reese has no relevant financial relationships to disclose.

View ClinicalThoughts from this Author

Released: September 7, 2022

Key Takeaways

  • Across the globe, women with HIV are trying to thrive despite inadequate resources.
  • Women aging with HIV face unique challenges, such as added barriers to receiving care, issues with self-care, and psychosocial issues.
  • Women must become self-advocates to optimize the care they receive, and we need to make sure all aging people have the tools they need to navigate life.

As a Black woman 70 years of age who has been living with HIV for 23 years, I have the lived experience to be able to speak on the nonmedical challenges faced by older women with HIV. I’m the Executive Director of Older Women Embracing Life. We organized in 2004 as a group of older women with HIV for whom a support group was not available. I'm also a board member of the International Community of Women Living with HIV in North America. We work with women all over the world with HIV.

Stigma, ageism, sexism, and racism help drive the HIV epidemic in women. When HIV was first described, it was not called HIV. It was called GRID—gay-related immunodeficiency—and for many, HIV still is primarily seen as a disease of gay men. To many, women are not the “real” HIV epidemic—and around the globe, women with HIV are trying to thrive despite inadequate resources. Worldwide, approximately 50% of people with HIV are women.

Women with HIV have been underserved, underresourced, and underresearched. We need more research on HIV and women, particularly aging women. Women with HIV are left out of clinical trials and studies based on inclusion criteria. When we are young, we are excluded based on childbearing potential. When we are older, we don’t meet the age criteria. Finally, events that occur with older women are just not studied.

Interactions With Healthcare Professionals
I believe that many healthcare professionals are not tuned into the unique problems of women with HIV. We must encourage women with HIV to have the courage to speak up about the issues they are facing. Issues that older women deal with may be intimate partner violence, financial issues, or elder abuse by family members. We deal not only with the stigma of having HIV, but we also may blame ourselves for being HIV positive.

No matter which type of healthcare professional you are, I suggest that you listen to the older woman who is sitting across from you. Know that she is a whole human being. The issue that needs to be addressed today might not be her HIV, but it is still important and impacts her overall health. When you take time with a patient, it increases their trust in you and the medical profession, and they are more likely to follow the treatment plan you suggest.

Sexual Health
From what I have noticed, most healthcare professionals do not address sexual activity with their older female patients. Sex is part of the life span, but healthcare professionals don’t want to talk about sex because they’re not comfortable having a sexual discussion with older women—a discussion that may include sexual practices and number of partners. Many presume that older women are not interested in sex. But sex should be just a normal conversation between a healthcare professional and patient—older or not, female or not.

Mental Health and Cognitive Decline
Women who are aging with HIV are very concerned about memory loss and cognitive decline. They have seen it in their families or in their circle of friends. People with HIV need a baseline neurologic exam, so that if they are concerned about decline, it can be objectively measured. They should be directed to activities that strengthen their functioning, including games and puzzles.

Cognitive decline also can affect medical management. Older people may forget to take their medications, or they may forget that they took the medication and take it again. This can impact the overall quality of a person's health and life and must be addressed as part of HIV care.

Older women spend so much time taking care of everyone else—their grandchildren, their adult children, maybe even their own parents. In the end, they may not take care of themselves. They may not eat healthy meals—or they may skip meals—and they may forget their own medications because they’re busy doling out medications for their parents or others for whom they are providing care.

People who are older may confuse self-care with being pampered, and it is not seen as important to them—but self-care is important. Older people need to be reminded that prioritizing oneself is okay.

Maintaining self-esteem is an important part of self-care. Because it partly has to do with appearance and how one feels about oneself, it discounts aging people. HIV medications may cause weight gain and fat redistribution.  Being self-conscious about one’s body may interfere with the ability to have appropriate sexual partners or appropriate relationships.

Psychosocial Issues
Psychosocial issues are real and, if unaddressed, can lead to unhealthy outcomes, including
nonadherence to one’s medication regimen or disengaging in medical care.

The isolation that many older adults experience has been exacerbated due to the COVID-19 pandemic. Feeling that no one cares is the worst feeling anyone can have. Finding ways to connect, either in person or virtually, is important. Having a smartphone or a tablet should be required equipment for each household to help older women stay connected and reduce the risk of loneliness and social isolation.

Dealing With Inadequate Resources for Aging
We need to remember that HIV is only a small part of an aging person. We need to make sure aging people have all the tools they need to navigate life. We tend to discriminate and dehumanize people who don’t appear to be whole on the outside. We need to change policies, standards of care, and even laws that govern nursing homes and rehabilitation centers, assisted living facilities, and all places that care for those who are aging and need assistance in care.

In the end, we need to remember that HIV is a chronic, manageable disease, but it can become unmanaged quickly.

Your Thoughts?
Are you focused on the unique issues of women with HIV? What about people aging with HIV? Join the conversation by leaving a comment.

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