Living With HIV: Stress and Side Effects

Masonia Traylor was 23 when she was diagnosed with the human immunodeficiency virus (HIV) in 2010.

“The first couple of weeks, I just cried every day,” recalls Traylor. “I was reflecting on my whole life at 23, and I felt really disappointed in myself; questioned a lot of the decisions that I [had] made.”

But as Traylor was figuring it out, she found out she was pregnant 2 weeks after her HIV diagnosis. More than a decade later, Traylor’s 9-year-old daughter is healthy. But Traylor clearly remembers the tremendous amount of pressure and stress she felt.

HIV Diagnosis and Stress

An HIV diagnosis is life changing. Once you get it, there’s no effective cure. But with the right kind of medical treatment, you can keep the virus count in your blood low and live a long, healthy life without the risk of infecting others.

While medical advances have greatly improved life expectancy, the stigma and stress that stems from an HIV diagnosis can still take a toll on your quality of life.

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“This [HIV] impacts many, many things: your dynamics with your friends, your family, your workplace, and it leads to a great deal of mental and emotional stress,” says Alan Taege, MD, an infectious disease specialist at the Cleveland Clinic in Ohio.

Negative attitudes against HIV are mostly rooted in misinformation about how the infection spreads. Many think it affects only certain groups of people. They often point to gender, sexual orientation, gender identity, race or ethnicity, drug use, or sex work as the cause of HIV spread. These attitudes may make you internalize the stigma and cause you stress. This “self-stigma” may make you feel scared to share the news of your HIV status with your loved ones.

Traylor says she felt this way. “I looked at it as like a punishment at first,” she says. Even though the doctors tried to assure her that with proper and timely medical care, she would be OK, Traylor says it took her about a year before she felt ready to share her HIV status.

In fact, it took her almost 6 years to feel like she was “going to be OK.”

“This is because I wasn’t just physically sick. I was operating from a broken spirit,” Traylor says.

Managing Stress

When you have HIV, too much stress can work against your overall health, even if the treatment keeps your infection in check.

“When the body is under a significant amount of stress, it can lead to inflammation, which can trigger a whole host of cascades in the body that in a nutshell, makes other chronic diseases either more likely or worse,” says Jonathan Colasanti, MD, an associate medical director at the Infectious Disease Program at Grady Health System in Atlanta.

While many find an HIV diagnosis to be a stressful time in their lives, some handle it better, especially if they have a good support system. But Taege says it’s important to assess his patients’ state of mind early on to help them deal with stressors head-on.

When he meets someone newly diagnosed with HIV, he says he tries to find out what they know about the disease and how well they’re handling the diagnosis.

“We [may] need assistance from not only our social workers, but specific counselors and psychiatrists, because many of these people need that type of help,” Taege says.

Managing Treatment Side Effects

Treatment for HIV involves medicine called antiretroviral therapy (ART), which can control the amount of HIV in your blood, or your viral load. Usually, people with HIV can see results kick in within 6 months after they start the medicine. The amount of HIV can get low enough to become “undetectable,” or unable to be traced in blood tests. This means that your viral load is low enough that you can stay healthy and won’t spread HIV to others.

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But you need to take your medication just as your doctor prescribes. If you miss doses, it may make the virus in your body resistant to your medication so that it doesn’t work anymore. The virus can then start to multiply and attack your immune system. This will increase your chances of developing AIDS. It also means that you can spread it to others.

At the moment, most of the drugs available are in the form of daily pills you have to take once or twice a day by mouth. While newer medications have greatly cut down on side effects for a lot of people, it’s still possible to get side effects, including digestive issues, difficulty sleeping, tiredness, and others.

While the side effects can themselves act as a stressor, Colasanti says the act of swallowing a pill every day can become a burdensome reminder for some and affect their day-to-day life.

“They’re living with this disease that, as I mentioned, is quite stigmatized still. And so, as much as they want to just to just live their life, that daily pill reminder can be a very difficult reminder that won’t allow them to just forget about their disease and live their life,” Colasanti says.

How to Live Well With HIV

While the drugs and your body work hard to keep your viral load suppressed, it’s inevitable that you’ll feel some form of fatigue, stress, or pain in your day-to-day life. But there are things you can do to keep your symptoms in check and maintain the best possible health.

You can:

Plan ahead. It’s very important that you don’t skip your medications. If you have a busy schedule, make it a point to plan and pack your pills to take with you.

Get mental health support. If you’re feeling down or stressed, tell your health care team about it. They can help direct you to appropriate mental health experts like therapists or psychiatrists who can help you deal with any emotional issues you may be facing.

“For me, having mental health therapy is definitely the number one thing,” Traylor says. You can also find a friend or a family member to talk about your feelings.

Stop alcohol and drugs. If you smoke or take drugs, it can get in the way of allowing the treatment to work properly.

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Through her HIV activism, Traylor was able to meet other people living with HIV long-term, especially other older Black women, who were able to give her hope and the ability to visualize her own life with HIV in the long run.

Practice self-care. Find time to take care of yourself. Eating well and getting lots of rest can be a form of therapy. Traylor says self-care can be as simple as making it a point to get your nails done often to pamper yourself or to make time to listen to your favorite music.

Get to know your doctor. To navigate your HIV journey successfully, Taege says it’s very important to have a solid relationship with your doctor first.

“You have to be comfortable with the care provider you choose. If you feel I am not that right person, you tell me and I’ll find somebody for you, because if you don’t have a good solid working relationship with your care providers, it’s not going to work for you,” Taege says.

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Colasanti agrees that people need to feel free to voice their concerns to their doctors. For him, as a doctor, it may become easy over time to see HIV as a treatable lasting condition like diabetes or high blood pressure that can simply be managed with drugs.

“That’s really easy for me to say as a doctor who had seen the treatment evolve and where we are now, compared to where we were 2 decades go. But that’s just lip service to someone that’s actually living and struggling in the moment. And so, I think it’s important to have that conversation with your HIV provider to say, ‘I’m struggling, and I need help.’”