Living with HIV: stress and side effects

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

“For the first couple of weeks, I cried every day,” Traylor says. “At 23, I looked back at my whole life and was very disappointed in myself; I questioned many of the decisions I made [had] made.”

While Traylor figured 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 immense pressure and stress she felt.

An HIV diagnosis is life-changing. Once you get it, there is no effective cure. But with proper medical treatment, you can keep the number of viruses 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 of an HIV diagnosis can still affect your quality of life.

“This [HIV] it affects so many things: your dynamic 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 towards HIV are mostly rooted in misinformation about the spread of the infection. Many people think that it only affects certain groups of people. Gender, sexual orientation, gender identity, race or ethnicity, drug use, or sex work are often cited as causes of HIV transmission. These attitudes can lead people living with HIV to internalize stigma and cause stress. This “self-stigma” can make them afraid to tell their loved ones about their HIV status.

Traylor says he felt the same way. “At first I saw it as punishment,” he says.

The doctors tried to assure me that everything would be fine with proper and timely medical care. But Traylor says it took about a year before he was ready to share his HIV status. And it took almost 6 years for him to feel like he was going to be “okay”.

“It’s because I wasn’t just physically sick,” Traylor says. “I operated with a broken spirit.”

With HIV, too much stress can affect your overall health, even if treatment is keeping your infection under control.

“When the body is exposed to a significant amount of stress, it can lead to inflammation, which can set off a series of cascades in the body that, in a nutshell, make other chronic diseases more likely or worse,” says Jonathan Colasanti, MD. , medical director of the Infectious Disease Program at Grady Health System in Atlanta.

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

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

“We [may] we need help not only from our social workers, but also from specialist counselors and psychiatrists because a lot of these people need that kind of help,” says Taege.

A study shows that too much stress can interfere with HIV treatment, increasing the viral load in the blood and making it more likely that HIV will develop into acquired immunodeficiency syndrome (AIDS). This is the stage of HIV where the virus destroys the immune system’s ability to fight infection and can lead to death.

If you are under a lot of stress and have trouble sticking to your treatment plan, let your doctor know.

“It’s important to take the bull by the horns, so to speak, on stress, because stress has a negative impact on cardiovascular disease, cancer, and these other health conditions that we know people with HIV have. they are at greater risk,” says Colasanti.

Treatment for HIV includes medicine called antiretroviral therapy (ART), which can control the amount of HIV in your blood, or viral load. People with HIV can usually see results within 6 months of starting the drug. The amount of HIV may be low enough to be “undetectable” or undetectable with a blood test. This means your viral load is low enough to keep you healthy and prevent you from spreading HIV to others.

But you must take the medicine as prescribed by the doctor. If you miss a dose, the virus in your body can become resistant to the medicine, so it no longer works. The virus can then begin to multiply and attack the immune system. This increases the chance of developing AIDS. It also means you can distribute it to others.

Currently, most medications available are in the form of daily pills that must be taken by mouth once or twice a day. While newer medications have significantly reduced side effects for many people, side effects can still occur, including digestive problems, trouble sleeping, fatigue, and others.

While the side effects themselves can act as a stressor, Colasanti says swallowing a pill every day can be a stressful reminder for some people and affect their daily lives.

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“They live with this disease, which, as I mentioned, is still quite stigmatized. So as much as they want to live their lives, this daily pill can be a very difficult reminder that doesn’t allow them to just forget about their illness and live their lives,” says Colasanti.

Traylor says he’s experienced this dilemma.

“For those who struggle to take our meds, you are constantly reminded that the downside is that you are not worthy, you are not valuable, you have HIV, it makes you ‘less.’ But on the other hand, I’m taking it because I need to reaffirm… that it’s mine [life is] valuable, says Traylor.

The FDA has approved an injectable HIV drug (Cabenuva) that only needs to be taken once a month. This can be an alternative form of therapy for people who find it burdensome to take daily pills to suppress HIV.

If you find it difficult to take daily pills for your HIV infection, ask your doctor if you can switch medications or if you are eligible for injections. Do not skip doses without first talking to your doctor. If necessary, your doctor can work with you to develop a treatment plan that is best for you.

While the medications and your body are working hard to suppress the viral load, it is inevitable that you will feel some fatigue, stress or pain in your daily life. But there are things you can do to help control your symptoms and maintain the best possible health.

You know:

He plans ahead. It is very important that you do not miss your medication. If you have a busy schedule, plan ahead and pack the pills to take with you.

Gets mental health aid. If you feel down or stressed, tell your healthcare team. They can help refer you to the right mental health professionals, such as therapists or psychiatrists, who can help you deal with any emotional problems you may have.

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

Stop smoking and drug abuse. If you smoke or take drugs, this can prevent the treatment from working properly. When it comes to alcohol, if you drink too much or need to stop for health reasons (for example, if you have liver disease), your doctor can help you find the right resources to help you cut back or quit.

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Exercise. Try to stay physically active as much as possible. Things like walking, yoga, or gardening can help relieve stress and tension.

Join a support group. It is important to connect with others who are living with HIV and who can share their life experiences with you. This will make you feel like you are part of a community.

“Support groups exist in practically every city. Even if you’re not in a nearby city, find an HIV care provider and a social worker, and they can get involved because they become extremely important,” says Taege.

Reaching out to others has proven to be a lifesaver for Traylor.

“(As) I started sharing my story, I educated myself. I got attention and started getting more involved in campaigns. I started asking a lot of questions and got involved in a lot of community work,” he says.

Through her HIV activism, Traylor was able to meet others with long-term HIV infection, especially other older black women who could give her hope and the ability to envision her own life with HIV in the long term.

Practice self-care. Find time for yourself. Eating well and getting plenty of rest can be a form of therapy. According to Traylor, self-care can be as simple as getting your nails done often, pampering yourself, or taking time to listen to your favorite music.

Get to know your doctor. To successfully navigate HIV, Taege says it’s critical to first develop a solid relationship with your doctor.

“You have to be comfortable with the caregiver you choose. If you feel like I’m not the right person, tell me and I’ll find someone for you, because if you don’t have a good solid working relationship with your caregivers, it’s not going to work for you,” says Taege. .

Colasanti agrees that people should feel free to voice their concerns to their doctors. Over time, it may become easier for you, as a doctor, to view HIV as a chronically treatable condition, like diabetes or high blood pressure, that can simply be treated with medication.

“That’s very easy for me to say as a doctor who has seen how treatment has evolved and where we are now compared to where we were 2 decades ago. But that’s just lip service to someone who’s actually living and struggling in the moment. That’s why I think it’s important to talk to the HIV provider, to say, “I’m struggling and I need help.”