HIV self management is nothing short of difficult.
Imani (not her real name) was thirty-two when she contracted HIV. Surrounded by sister-friends who died from the virus, Imani did not expect to reach middle age. Now in her fifth decade of life, Imani has new and multiple challenges. She self-manages her HIV—along with her diabetes, 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’s 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 datum 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.”
As a welcoming and needed study, its narrative gives voice, validation, and strength to Imani and other sisters’ of African descent reality.
“I’m taking it one day at a time. First, since my kids are grown, I gotta put me number one first. And, sometimes it’s still hard for me… taking my medicine, I help somebody along my way…. Long as I can help somebody, then I can help myself, you know. I know this journey that I’m going on, it’s not gon’ be in vain.., 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,”Elana told the interviewer in the study who asked, “What does HIV self-management mean to you?”
In interviewing women like Elana the study examined HIV-positive and co-morbidity self-management, social support needs, medication adherence, and future plans for old age.
However, its promotion, in my opinion, is dubious:
“Older African-American women living with HIV find chronic illnesses more difficult to self-manage…The majority were managing between one and five comorbidities including arthritis, cancer, depression, diabetes, heart disease, hepatitis, high blood pressure and tuberculosis. 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.”
There is the African American adage about aging that states “Black don’t crack.” While on the surface—our skin and public countenance—might not “crack” our psyche and our bodies do. The above-mentioned stressors—social determinants and comorbidities—the African American community have lived longer with than HIV. And while these social determinants and co-morbidities are diseases difficult to self-manage in African American communities, HIV is no cakewalk either.
I wondered what was being promoted via 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 of 23 HIV-positive women of African descent between the ages of 52-65 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 patient user-friendly HIV cocktails out there for African American women.
But, the study skews, if not create, a fallacious narrative. It implies that self-managing 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 is the co-morbidities 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 with this new future protocol more African American women will have access to it.
But in now recognizing that HIV care is not a single-disease for African American women why would researchers think, for a moment, that HIV self-management—even with its 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,” Beth told interviewer in the study.