Masonia Traylor was 23 when she was diagnosed with the Human Immunodeficiency Virus (HIV) in 2010.
“The first few weeks, I cried every day,” remembers Traylor. “I was thinking about my whole life at 23 and felt really disappointed in myself; questioned many decisions that I [had] made.”
But as Traylor found out, she found out she was pregnant 2 weeks after being diagnosed with HIV. More than a decade later, Traylor’s 9-year-old daughter is in good health. But Traylor clearly remembers the enormous amount of pressure and stress she felt.
HIV diagnosis and stress
Being diagnosed with HIV is life changing. Once you have it, there is 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 risking infecting other people.
Although advances in medicine have dramatically improved life expectancy, the stigma and stress that comes with being diagnosed with HIV can still take a toll on your quality of life.
“This [HIV] affects a lot, a lot of things: your dynamics with your friends, your family, your workplace, and it causes a lot of mental and emotional stress, ”says Alan Taege, MD, infectious disease specialist at the Cleveland Clinic in Ohio .
Negative attitudes towards HIV are mainly rooted in misinformation about how the infection is spread. Many believe that it only affects certain groups of people. They often point to sex, sexual orientation, gender identity, race or ethnicity, drug use or sex work as the cause of the spread of HIV. These attitudes can internalize the stigma and cause you stress. This “self-stigma” can make you afraid to share the news of your HIV status with those close to you.
Traylor says she felt that way. “I saw it as a punishment at first,” she says. Even though doctors tried to assure her that with proper and timely medical care she would be fine, Traylor says it took her about a year before she felt ready to share her HIV status.
In fact, it took almost 6 years for her to feel like she was “okay”.
“It’s because I wasn’t just physically sick. I was operating from a broken mind, ”says Traylor.
To manage stress
When you are infected with HIV, too much stress can affect your overall health, even if treatment helps control your infection.
“When the body is under a significant amount of stress, it can lead to inflammation, which can trigger a whole host of stunts in the body that, in short, make other chronic diseases more likely or more serious,” explains Jonathan Colasanti, MD, associate medical director of 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 cope better, especially if they have a good support system. But Taege says it’s important to assess the state of mind of his patients 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 he knows about the disease and how well he handles the diagnosis.
“We [may] need help not only from our social workers, but also from specific counselors and psychiatrists, because many of these people need this kind of help, ”says Taege.
One study found that too much stress could interfere with your HIV treatment, increase the viral load in your blood, and increase the likelihood that your HIV will develop into Acquired Immune Deficiency Syndrome (AIDS). This is the stage of HIV when the virus destroys your immune system’s ability to fight infection and can lead to death. If you’re under a lot of stress and having trouble sticking to your treatment plan, talk to your doctor.
“It’s important to kind of take the bull by the horns, so to speak, in terms of stress, because stress has negative impacts on cardiovascular disease and cancer, and on these other medical conditions that we know to be. people living with HIV are more at risk, ”says Colasanti.
Managing side effects of treatment
Treatment for HIV involves a 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 start within 6 months of starting treatment. The amount of HIV can become low enough that it becomes “undetectable” or impossible to trace in blood tests. This means that your viral load is low enough that you can stay healthy and not pass HIV on to others.
But you should take your medicine exactly as your doctor tells you to. If you miss doses, it can make the virus in your body resistant to your medicines so that it no longer works. 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 broadcast it to others.
Today, most of the medications available come in the form of daily pills that you need to take once or twice a day orally. Although the new drugs have dramatically reduced side effects for many people, it is still possible to have side effects including digestive issues, difficulty sleeping, fatigue, and the like.
Although the side effects themselves can act as a stressor, Colasanti says that swallowing a pill every day can become a distressing reminder for some and affect their daily lives.
“They are living with this disease which, as I mentioned, is still quite stigmatized. And so, as much as they just want to live their life, this daily pill reminder can be a very difficult reminder that will not allow them to forget about their illness and go on with their lives, ”Colasanti says.
Traylor says she’s been through this dilemma.
“For those of us struggling to take our meds, you are constantly reminded that, on the downside, you are unworthy, you have no value, you have HIV, it makes you ‘less than “. But then, on the other hand, I take this because I have to reaffirm … that my [life is] precious, ”says Traylor.
The FDA recently approved the very first injectable drug (Cabenuva), which should only be taken once a month. This can be an alternative form of therapy for people who find it burdensome to take pills to maintain their HIV viral load daily.
If you have trouble taking pills every day for your HIV, it is best to ask your doctor if you can change the medicine or if you are eligible for the injection. Do not skip doses without first being executed by your doctor. If necessary, your doctor can work with you to develop the treatment plan that is best for you.
How to live well with HIV
Although drugs and your body work hard to keep your viral load suppressed, it is inevitable that you will experience some form of fatigue, stress, or pain in your day-to-day life. But there are things you can do to control your symptoms and maintain the best possible health.
Plan ahead. It is very important not to skip your medications. If you have a busy schedule, be sure to plan ahead and take your pills with you.
Get mental health support. If you are feeling depressed or stressed, talk to your healthcare team. They can direct you to appropriate mental health experts, such as therapists or psychiatrists, who can help you deal with any emotional issues you may be facing.
“For me, going to mental health therapy is definitely the most important thing,” says Traylor. You can also find a friend or family member to talk about your feelings.
Stop alcohol and drugs. If you smoke or take drugs, it may prevent the treatment from working properly.
If you are HIV positive, it may be a good idea to cut down or quit smoking. If you’re not sure where to start, talk to your doctor about available resources that can help.
Exercise. Try to stay physically active as much as possible. Activities like walking, yoga, or gardening can help relieve stress and tension.
Join a support group. It is important to connect with other people who are HIV positive and share their life experiences with you. It can make you feel like you are part of a community.
“Support groups exist in almost every city. Even if you are not in a nearby town, contact an HIV care provider and social worker, and they may attract you as they become of crucial importance, ”says Taege.
Reaching out to others has proven to be a lifeline for Traylor.
“(Like) I started to share my story, I was educating myself. I created awareness and started to get more involved in the campaigns. I started asking a lot of questions and got involved in a lot of the community work, ”she says.
Through her HIV activism, Traylor was able to meet other people living with long-term HIV, especially other older black women, who were able to give her hope and the ability to visualize her own. long-term life with HIV.
Practice self-care. Find the time to take care of yourself. Eating well and getting plenty of rest can be a form of therapy. Traylor says taking care of yourself can be as easy as getting your nails done often for pampering or taking the time to listen to your favorite music.
Get to know your doctor. To be successful on your HIV journey, Taege says it’s very important to first have a strong relationship with your doctor.
“You have to be comfortable with the care provider you choose. If you think I am the wrong person, tell me and I will find someone for you, because if you don’t have a good, solid working relationship with your caregivers it will not work for you. you, ”Taege says.
Colasanti agrees that people should feel free to voice their concerns to their doctors. For him, as a doctor, over time it can become easy to see HIV as a long-lasting treatable disease like diabetes or high blood pressure that can simply be managed with medication.
“It’s really easy for me to say as a doctor who has seen the treatment evolve and where we are now, compared to where we have been for 2 decades. But that’s only lip service to someone who lives and struggles in the moment. And so, I think it’s important to have this conversation with your HIV provider to say, ‘I’m struggling and I need help.’ “
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