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Emotional Issues of Women with HIV/AIDS

By Tobi E. Newman, L.M.S.W.-A.C.P.

November 2001

People with HIV face a number of medical, social, legal, and emotional issues associated with their diagnosis. Twenty years ago, in the beginning of the epidemic, HIV/AIDS was considered a fatal diagnosis, and the emotional issues were often those of loss: of health, of body image, of income, of family and friends, and of time. Entire social service agencies were established for gay men with HIV/AIDS to address many of these issues. Support groups and networks flourished to meet those social and emotional needs. But the so-called face of HIV/AIDS has changed and now increasingly reflects a female face, frequently poor and often a woman of color.

Women now account for more than 25% of AIDS cases in the US. These women are primarily of childbearing ages and, many times, are caught completely off-guard at their initial diagnosis. Many of these women report having gone from doctor to doctor trying to find out what was wrong with them. Often times, if they did not report a history of drug use or multiple sexual partners, their physicians did not even suggest an HIV test as part of their medical work-up. Once diagnosed, these same women often report a negative change in the attitude of their medical care professional. The message given is that "good" girls don't get HIV.

The initial HIV epidemic was defined as a gay-related infectious disease, which was followed by the recognition of injection drug users and prostitutes as "high-risk groups" likely to become infected. In 1990, sexual partners of injection drug users and bisexual men were recognized, and the idea of "high-risk groups" evolved into "high-risk behaviors." But no one looked at, wrote about, or talked about, ordinary women with no high-risk behaviors of their own who were vulnerable because of the unknown risky behaviors of their sexual partners. These women are often overwhelmed and confused by their diagnosis. They often feel blamed for their disease, which may lead to feelings of shame and guilt.

Finding coordinated and comprehensive care for women and children remains a challenge. Poor women with HIV face a wide range of barriers to care. Welfare reform and anti-immigration legislation have served to deny health care access and services. Those who still retain medical benefits are being forced into HMOs with constantly changing provider lists and few HIV-knowledgeable physicians. Tracking down HMO benefit information and receiving approvals for care may take many hours. Also, transportation difficulties like long rides, coupled with long waits in clinics, often interfere with children's school schedules.

Women with HIV/AIDS are often diagnosed late in the course of their illness. They usually delay seeking treatment or simply give up because of the time constraints thrust upon them by their traditional roles as caregivers to others. Women are often financially dependent and isolated, and the chores of caring for spouses and children interfere with their ability to seek assistance for themselves. These women may feel shame and guilt at their diagnosis but also at their inability to continue to provide for other family members' needs. Women worry about how they will be provided for financially and how they will take care of their children. Even women in higher socioeconomic situations feel ashamed and anxious about their ability to provide for themselves and their families.

Over the last 15 years, I have worked with thousands of men and women dealing with HIV issues. While many of the emotional issues are the same, far more women are also reliving past issues of abuse and trauma. Stressors and knowledge of past coping skills need to be explored in order for the social worker to assist clients in developing good coping skills for the present and future. Many of the women I have seen feel blamed by society and tell me they feel as if they are "damaged goods." They yearn for human touch, but feel frightened of having intimate relationships and of being rejected. Trust issues are important and must be repeatedly reinforced. Alcohol, drug use, and other possibly harmful behaviors should be addressed. Common emotions like anxiety, depression, and despair -- coupled with fear of abandonment -- can be overpowering and require the skills of a trained mental health professional. Individual therapy, appropriate medication, and support groups are all recommended interventions.

Regarding pregnancy, some women decide that their seropositivity precludes their becoming a mother. But other women are diagnosed while pregnant or at delivery and have added emotional issues to deal with besides the tremendous needs of a newborn. These situations can be complicated and call for competent, nonjudgmental clinicians to assist in dealing with these issues.

If you are a woman dealing with HIV, here are some ways to take control of your health and find inner strength:

  1. Talk to your case manager.

  2. Read through services listed in an HIV/AIDS services directory like The Blue Book (available at The Center for AIDS and many Houston HIV/AIDS service providers).

  3. Talk to a friend, family member, or another woman with HIV.

  4. Get a referral to a mental health professional at a treatment facility such as Thomas Street Clinic (713.873.4030), Montrose Clinic (713.830.3000), or Baylor Adult Psychiatry Clinic (713.798.4856).

  5. Find a counselor at a United Way Agency that operates on a sliding scale fee, such as Montrose Counseling Center (713.529.0037), Jewish Family Service (713.667.9336), or Family Service Center (713.861.4849).

  6. Get educated; subscribe to HIV publications like Project Inform Perspectives and WISE Words (800.822.7422; www.projinf.org), WORLD (510.986.0341), or Women Alive (800.554.4876).

Ms. Newman is a clinical social worker with Jewish Family Service and has been providing mental health services to people with HIV/AIDS since 1986. She can be reached at 713.729.6989, 713.667.9336, or tobynew@hal-pc.org.


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