Imani* was 32 when she contracted HIV. Having watched many of her sister-friends die as a result of the virus, Imani did not expect to reach middle age. Now in her fifth decade of life, Imani has multiple new challenges. She self-manages her HIV -- along with her diabetes and hypertension -- while searching for employment. The result of these stressors is depression. All of this has gravely impacted her ability to sustain medication adherence and her will to live.
But Imani is not alone. African-American women's struggle with HIV -- from the black community's stigmatization to the dominant culture's condemnation of them -- has both unduly burdened their daily lives and compromised their quality of care.
While numerous data have surfaced about African-American women living with HIV in their younger years, very little has surfaced about how they age with the disease -- until recently. The journal AIDS Patient Care and STDs this month published the qualitative study "Taking It One Day at a Time: African-American Women Aging With HIV and Co-Morbidities."
A welcome and needed study, it gives voice, validation, and strength to Imani and other sisters of African descent who are living with HIV.
When asked what HIV self-management means to her, a woman named Elana told an interviewer in the study:
I'm taking it one day at a time. First, since my kids are grown, I gotta put me one number first. ... Make sure I'm taking my medicine. ... I help somebody along my way.... Long as I can help somebody, then I can help myself, you know. ... That's what it means to me, taking it one day at a time 'cause I don't know what the day gone bring. Just one minute at a time, one second at a time.
In interviewing women like Elana, the study examined HIV and co-morbidity self-management, social-support needs, medication adherence, and future plans for old age.
However, in my opinion, the way the study was promoted is dubious:
"Co-morbidities, including diabetes and hypertension, were perceived to be more difficult to self-manage than HIV," the study found. "This difficulty was not attributed to aging but to daily struggles such as lack of income and/or health insurance, an inflexible work schedule, and loneliness." ... The majority were managing between one and five comorbidities including arthritis, cancer, depression, diabetes, heart disease, hepatitis, high blood pressure and tuberculosis.
There is the African-American adage about aging that states that "black don't crack." While the surface -- our skin and public countenance -- might not "crack," our psyche and our bodies do. The African-American community has lived longer with the above-mentioned stressors -- social stressors and other chronic illnesses -- than with HIV. And while these diseases are difficult to self-manage in African-American communities, HIV is no cakewalk either.
I wondered what was being promoted by the study and why? As I continued to read the study, I think I might have found my answer.
With five focus groups conducted in Washington, D.C., comprising 23 HIV-positive women of African descent between the ages of 52 and 65, researchers Lari Warren-Jeanpiere, Heather Dillaway, Pilar Hamilton, Mary Young and Lakshmi Goparaju reported that "over time, HIV has become easier to manage in comparison to their other illnesses based on advancements they have experienced in their HIV treatment regimens."
On the one hand, this is great news. It paints an almost-sanguine picture that there are optimal and user-friendly HIV cocktails out there for African-American women.
But the study skews, if not creates, a fallacious narrative. It implies that HIV as a sole chronic stressor (as if that's possible in any HIV-positive person's life, especially people of color) isn't as unmanageable as the co-morbidities that most African-American women acquire with the disease as they age. And the reason is because of new meds and technological advancement in the field.
The report recognizes that HIV self-management and co-morbidity self-management must go hand-in-hand as a future medical protocol to provide optimal care for this demographic group. And hopefully more African-American women will have access to this new future protocol.
But in now recognizing that for African-American women, HIV management is not really about managing a single disease, why would researchers think for a moment that HIV self-management -- even with the new meds and technology -- is less difficult in sisters' lives than everything else they must constantly juggle, and especially as they age?
"Just help me to manage like I do the rest of my ailments and carrying on to, you know, to have a balance in everything," a woman named Beth told an interviewer in the study.
*Not her real name.