I had been working with Jessica for about two months when she arrived for her session in tears. A slim, soft-spoken, 69-year-old divorcée, she described an alarming phone call from a man she had recently dated, named Michael. Michael had tested positive for Human Immunodeficiency Virus (HIV).
Tears flew out of Jessica’s eyes. She had to be tested and was terrified.
Confusion filled her thoughts. How could this happen? I had no idea I was at risk. Her confusion was laced with fear after receiving her test results: Jessica was HIV positive.
HIV Symptoms and Risk Factors for Older Adults
Jessica wasn’t my first patient to receive a diagnosis of HIV, and she won’t be my last. (According to the CDC, people 55 and older accounted for 26% of the estimated 1.2 million people living with HIV infection in the US in 2011.)
Although miraculous strides have been made in HIV treatment — it is no longer a terminal illness, but is now a manageable condition — people continue to be newly diagnosed. And people 60 and over are not invulnerable to a diagnosis. On the contrary, they are becoming increasingly at risk.
There are a few reasons why. People 60 and over are dating, but are less likely to take precautions, such as getting tested before engaging in unprotected sex, or using a condom. Many don’t even know they’re at risk. Additionally, early HIV symptoms can mimic other problems that correspond with aging, such as fatigue, but doctors are less likely to test for HIV. This leads to undiagnosed people having unprotected sex, which renders people in this older age group at risk.
Jessica was not alone. Her doctor referred her to a support group for people 55 years and older who were newly diagnosed with HIV. Jessica felt shame, along with many of her group members, wondering how she could not have known she was at risk for HIV transmission.
She was shocked to hear so many stories similar to hers. Their stories echoed the same bewilderment: How could I be so uninformed?
The Stigma of HIV and Seniors
Younger people have grown up hearing about HIV. They’ve been educated about risk factors. They know about the diagnosis, about HIV transmission, about HIV treatment. Younger people don’t know a world without HIV.
On the other hand, people who are 60 and older grew up in an HIV-free world, and many married before the first cases of HIV appeared in 1981. Jessica, as well as other people I’ve worked with, didn’t know the difference between being HIV positive and having AIDS. Many thought of HIV as a terminal illness. Some believed that HIV was largely a problem isolated to the gay community.
Because of their lack of knowledge about HIV, and HIV transmission, older people fear they will be negatively judged or discriminated against, as a result of their diagnosis.
Fear of discrimination can lead to trepidation regarding disclosure of their HIV status to family and friends, resulting in isolation and a lack of social support. Some don’t comply with treatment regiments, using denial as a coping mechanism, or not wanting anyone (including the local pharmacist) to see their medication. In fact, one patient I worked with traveled all the way from Manhattan to Brooklyn to ensure that no one he knew would see him entering his doctor’s office.
Many people stop dating, feeling damaged. Who would want me, is something I’ve heard frequently. And it was a painful question for Jessica for much of our therapy together. Jessica was terrified of the reaction prospective partners would have upon revealing her status. For months she opted out of the dating world for fear of rejection.
Understanding and Overcoming Discrimination
I worked with Jessica to help her reduce the stigma she carried in her own mind — her discriminatory beliefs about HIV. She couldn’t even consider revealing it to a prospective love interest until she understood that she could still live a fulfilling life with her diagnosis, that the diagnosis wasn’t her fault, and that she wasn’t damaged. It took some time, but eventually, she came to a comfortable level of acceptance.
Unfortunately, it was harder for her to date. Every time she got close to a man, and before intimacy, she had to tell him about her status. Many were appreciative of her disclosure, responding empathetically, but were not interested in continuing in a relationship. They didn’t totally understand what the diagnosis meant, and were unwilling to meet with Jessica’s doctor to acquire a better understanding.
This caused Jessica months of depression, as she wavered back and forth, wondering if she should even continue dating. Thankfully, Jessica had opened up to her family and had her group. She had a lot of support. This was important.
It was almost a year later when Jessica met a man who was willing to educate himself about HIV, restoring a sense of hope for Jessica that her romantic life was not over. Being open to understanding reduces stigma. And the new man in her life was committed to learning as much as he could.
It’s important that the stigma associated with HIV be addressed. This not only breaks stereotypes and teaches acceptance for those diagnosed, but also means people are more likely to be tested and practice precautionary behavior.
HIV is no longer a terminal illness, but the stigma continues to negatively affect people, leading to fear of rejection, isolation and depression. Discrimination is best battled through openness, education, empathy and understanding.
Editor’s Note: For information regarding risk factors, diagnosis and HIV prevention for people over 50, we encourage you to visit aids.gov. Jessica’s name was changed to protect her anonymity.