Many diseases and infections affect a specific part of the body, but HIV lives in the immune system and therefore ultimately impacts the whole body. While health care providers are trained to be experts in highly focused areas within the mental and physical health fields, they need to be sensitive to how the lines between their specialties can blur and work closely with other providers to maximize benefits for patients. Coordinating care is critical, as many medications can become dangerous or ineffective when combined. Side effects for medicines addressing physical ailments can include mental health issues like depression, and medications addressing mental health conditions such as depression may include physical symptoms like nausea or fluctuations in weight.
Similarly, some of the challenges facing people living with HIV can be understood as both physical and mental health conditions. Dementia impacts both the way the brain processes information and peoples’ emotional lives. Diarrhea or loose stools can be a side-effect of some HIV medications; it can also have a profound impact on how people feel about themselves and their ability to leave the house. Some people struggling with the emotional fallout of their HIV diagnosis may seek comfort in alcohol or drugs; in addition to the usual strains these substances can put on their organs, substance use can impact their ability to keep up with their medication and other self-care regimens.
There’s still a lot we don’t know about HIV/AIDS, especially when it comes to aging with the virus, but some things we do know. HIV affects the body’s immune system: without proper treatment it becomes harder and harder for a person with HIV to fight off infections and diseases over time. Some of these illnesses, known as “opportunistic infections,” are considered “AIDS defining”—when an HIV-positive person develops one of these infections or diseases, their diagnosis shifts to “AIDS.”
HIV affects everyone differently—some people live with the virus for a long time without getting sick, while others experience problems more quickly. Many people with HIV don’t realize they have the virus and may approach their doctor with complaints that sound like normal symptoms of aging. If their risk behaviors don’t come up in conversation with their doctor and they don’t get tested for HIV, they may not be diagnosed until a later, more advanced stage of disease.
Most people only get kind of a cold, or flu symptoms, but I had this horrible sore throat. My doctor said, “You have a horrible virus, your thyroid is doing summersaults. I don’t know what you have.” Never thought to test me for HIV. A 58-year-old white woman, she doesn’t have sex, right? —Sue Saunders, age 73
There is still no cure for HIV or AIDS, but studies show that the sooner people get into treatment the better. But people can face a range of obstacles to accessing care, including living far away from experienced HIV providers, depending on inconsistent or inadequate public transportation systems, lacking health insurance, and confronting social barriers related to race, class, ageism, cultural differences, and homophobia.
For those who start on medications, the options available today are much better than what used to be available, but the side effects can be difficult for some people to tolerate.
The medicine that they had me on, it was just making me so sick. Oh, it was like I just don’t wanna live if I have to live like this. But they said the medicine that will help you makes you sick at first, until you get used to it. But it took a long time for me to get used to it. —Jackie Anderson, age 54
In addition, older people with HIV are more likely to experience “co-morbidities” like heart, kidney, and liver diseases, neuropathy, arthritis, and some cancers. The virus may also speed up the aging process, even among people with seemingly well-controlled HIV, including an “undetectable viral load”: some men and women with HIV in their 50s experience problems that normally develop much later in life, like osteoporosis (particularly unexpected in men), certain cancers, diabetes, and dementia. Some of the medicines patients take to address these illnesses cannot be combined with certain HIV medications, making treatment even more challenging.
You have to read up on every single medicine, what it may do to you, what the side effects may be, what you can’t mix it with. I can’t take things like Celebrex—I have severe arthritis, I can’t take any of those medications, because of the medicine I’m taking. And if you take it together, you just get sicker. So you have to know what you’re doing, and it’s not easy. —Sue Saunders, age 73
Some studies suggest that women living with HIV may go through menopause at younger ages than their HIV-negative peers and may experience more menopausal symptoms like hot flashes, decreased bone density, and increased heart health risks.1
On a day-to-day level, having a compromised immune system means that people with HIV are extremely vulnerable to germs that other people—including the people who care for them—are able to fight off far more easily.
I have seen people not really understanding what immuno-suppression is and coming to work sick. It’s a deadly consequence to come into work. That’s common sense, but it’s really important information. Especially people that are lower socio-economic group, that really need their money. They really struggle with that decision sometimes. —Laura, Psychiatric Nurse Practitioner
Mental Health Issues
People with mental health and substance use issues are less likely to practice safer sex and drug use behaviors, which increases their risk of becoming HIV-positive; they are also more likely to learn about their infection later in the disease process. Once diagnosed, people with these issues tend to start treatment later and can have a harder time following up with their providers and consistently adhering to the structured treatment schedules associated with many HIV medications. What’s more, stress, depression, and substance abuse have all been shown to lead to decreased CD4 counts and a faster progression to an AIDS diagnosis.2
My own experience of dealing with depression and anxiety really came out after I got sober. So probably I had those issues for a long time, but I was self-medicating with alcohol. And that really became apparent when Ray died. I had a tough year. —Larry McKeon, age 61
I wasn’t taking medicine for about two years, ’cause I was still into the drug use. So the medicine I was getting, I was selling it, you understand. And each day go past, I was getting worse and worse. —Thomas Jones, age 58
I came to decide that I was not gonna let the HIV/AIDS kill me, I was maybe let the drugs and the alcohol do that. Because I seen too many people go like that, wasting away, like vegetables. And I wanted to make my own choice of how I wanted to go. —Louis Curbelo, age 51
Depression and feelings of isolation are common among older adults living with HIV: the ROAH study14 found that they experience depression at a rate almost 5 times higher than the general New York City population. Physical challenges like chronic pain and practical challenges like accessing appropriate housing and expensive medications can contribute to the problem. A changing sense of self and the loss of independence can also be extremely difficult.
I can’t do nothing, and it bothers me ’cause I’m so used to doing things by myself. Now I got other people doing things for me. I don’t like it but ain’t nothing I can do. Ain’t nothing I can do. —Thomas Jones, age 58
I had lost weight. I was in a deep depression. And then after that, one of the CNAs (Certified Nursing Assistants) threw my teeth away. It took a toll on me… after I lost those, I started going downhill. I was crying a lot. —Jackie Anderson, age 54
It can be incredibly challenging to navigate the emotional roller coaster that can come with an HIV or AIDS diagnosis, and the coping strategies that work well for some people might not be right for others. Support groups can play a central role in improving a person’s quality of life. While individual therapy can be extremely helpful for some people, it is not for everyone.
Support groups are marvelous. The world is filled with beautiful people who are gonna help you stay healthy. Most of my family is dead by now and I needed family. My family is my community of gay people and they have been wonderful, not that heterosexuals haven’t been grand to me either. —Bill Rydwels, age 77
Therapy, I don’t even wanna see that word no more. They therapy you to death. —Thomas Jones, age 58
Others find comfort in spirituality, which can have a positive impact on their physical health as well: one study found significant increases in spirituality after HIV diagnosis, which it also linked to better CD4 counts.15 While some may find it surprising, an HIV diagnosis—and the subsequent efforts to make sense of what it means—has inspired many people to make positive life changes.
It’s funny that it took the HIV to change my life to a positive, because through the drugs and the alcohol, I don’t know if I’d be sitting here today. It keeps me humble to be here. —Louis Curbelo, age 51