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,” Traylor says. “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.”
While Traylor was figuring it out, she found out she was pregnant 2 weeks after her HIV diagnosis. More than a decade later, Traylor’s daughter is healthy. But Traylor clearly remembers the tremendous amount of pressure and stress she felt.
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.
“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 people with HIV internalize the stigma and cause them stress. This “self-stigma” may make them feel scared to tell their loved ones about their HIV status.
Traylor says she felt this way. “I looked at it as like a punishment at first,” she says.
Doctors tried to assure her that with proper and timely medical care, she would be OK. But Traylor says it took her about a year before she felt ready to share her HIV status. And it took almost 6 years to feel like she was “going to be OK.”
“This is because I wasn’t just physically sick,” Traylor says. “I was operating from a broken spirit.”
With 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.
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.
One study found that too much stress could work against HIV treatment, raising viral load in the blood and making it more likely that HIV will progress to acquired immunodeficiency syndrome (AIDS). That’s the stage of HIV in which the virus destroys the immune system’s ability to fight infection and may lead to death.
If you have a lot of stress and find it hard to stay on top of your treatment plan, tell your doctor about it.
“It’s important to kind of take the bull by the horns, so to speak, in terms of the stress, because stress has negative impacts on cardiovascular disease, and on cancer, and on these other medical conditions that we know that individuals living with HIV are at a higher risk for,” Colasanti says.
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.
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 raise 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 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.
Traylor says she’s experienced this very dilemma.
“For those of us who are struggling to take our meds, you’re being reminded consistently that on the downside, you’re not worthy, you’re not valuable, you have HIV, this makes you ‘less than.’ But then, on the flip side, I’m taking this because I have to re-affirm … that my [life is] valuable,” Traylor says.
The FDA has approved the injectable HIV medication (Cabenuva), which needs to be taken only once a month. This can be an alternative form of therapy for people who find taking daily pills to suppress their HIV to be a burden.
If it’s hard for you to take pills every day for your HIV, ask your doctor if you can switch medications or if you’re eligible for the injection. Don’t skip doses without talking to your doctor first. If needed, your doctor can work with you to come up with the treatment plan that works best for you.
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 smoking and substance abuse. If you smoke or take drugs, it can hamper your treatment from working properly. As for alcohol, if you’re drinking too much or need to stop for health reasons (like if you have liver disease), your doctor can help you find resources to cut down or quit.
Exercise. Try to stay physically active as much as possible. Things like walking, yoga, or gardening can help you release stress and tension.
Join a support group. It’s important to connect with others who have HIV and can share their life experiences with you. This can make you feel that you’re a part of a community.
“Support groups exist in virtually every city. Even if you’re not in a city close by, get a hold of an HIV care provider and a social worker, and they can get you hooked into these because these become critically important,” Taege says.
Reaching out to others proved to be a lifesaver for Traylor.
“(As) I started sharing my story, I was educating myself. I created awareness and I started getting more involved in campaigns. I started asking a lot of questions, and I got involved in a lot of the community work,” she says.
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.
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.’”