Masonia Traylor was 23 years old when she was diagnosed with the Human Immunodeficiency Virus (HIV) in 2010.
“I cried every day for the first few weeks,” recalls Traylor. “When I was 23 I thought about my whole life and was very disappointed in myself. questioned many of the choices I made [had] made.”
But when Traylor found out, she found she was pregnant 2 weeks after she was diagnosed with HIV. More than a decade later, Traylor’s 9-year-old daughter is healthy. But Traylor clearly remembers the tremendous pressure and stress she felt.
HIV diagnosis and stress
An HIV diagnosis changes life. Once you get it there is no effective cure. However, with the right 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 dramatically improved life expectancy, the stigma and stress associated with being diagnosed with HIV can affect your quality of life.
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“These [HIV] affects many, many things: your dynamic with your friends, your family, your workplace and it leads to a lot of psychological and emotional stress, ”says Dr. Alan Taege, an infectious disease specialist at Cleveland Clinic in Ohio.
Negative attitudes towards HIV are mainly based on misinformation about the spread of the infection. Many think that it only affects 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 the spread of HIV. These attitudes can make you internalize the stigma and cause stress. This “self-stigma” can make you fearful about telling loved ones the news of your HIV status.
Traylor says she felt this way. “I initially saw it as a punishment,” she says. Although doctors tried to reassure her that with adequate and timely medical care, she would be fine, Traylor said it took 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 fine.
“That’s because I wasn’t just physically ill. I operated on a broken mind, ”says Traylor.
Coping with stress
When you have HIV, too much stress can reduce your overall health, even if treatment keeps your infection in check.
“When the body is under significant stress, it can lead to inflammation, which can trigger a number of cascades in the body that, in short, make other chronic diseases either more likely or worse,” says Dr. Jonathan Colasanti, Associate Medical Director, Infectious Disease Program at Grady Health System in Atlanta.
While many find being diagnosed with HIV a stressful time in their life, some deal with it better, especially if they have a good support system in place. But Taege says it’s important to assess the state of mind of your patients early on to help them deal directly with stressors.
When he meets someone newly diagnosed with HIV, he is trying to find out what they know about the disease and how well they are dealing with the diagnosis.
“We [may] not only need support from our social workers but also from specific counselors and psychiatrists because many of these people need this kind of help, ”says Taege.
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One study found that too much stress can counteract your HIV treatment, increasing the viral load in your blood, and making it more likely that your HIV will develop into acquired immunodeficiency syndrome (AIDS). At this stage of HIV, the virus destroys your immune system’s ability to fight infection and can lead to death. If you experience a lot of stress and are having difficulty following your treatment plan, let your doctor know.
“It’s important to take the bull by the horns when it comes to stress, as stress has a negative impact on cardiovascular disease, cancer, and those other diseases that we know people living with HIV are at a higher rate At risk, ”says Colasanti.
Treating side effects of treatment
Treatment for HIV includes a drug called antiretroviral therapy (ART), which can be used to control the amount of HIV in your blood or viral load. Usually, people with HIV can see results within 6 months of starting the medicine. The amount of HIV can get so low that it is no longer detectable or cannot be traced back to blood tests. This means that your viral load is so low that you can stay healthy and not pass HIV on to others.
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However, you must take your medication as your doctor prescribes. Missing doses can cause the virus in your body to become resistant to your medications, causing it to stop working. The virus can then multiply and attack your immune system. This increases your chances of developing AIDS. It also means you can pass it on to others.
Currently, most of the drugs available are in the form of daily pills that you must take orally once or twice a day. While newer drugs have greatly reduced side effects in many people, side effects can still occur, including digestive problems, insomnia, fatigue, and others.
While the side effects themselves can act as a stressor, Colasanti says that swallowing a pill every day can become a stressful memory for some and affect their daily life.
“You live with this disease, which, as I mentioned, is still quite stigmatized. And as much as they want to live their lives, that daily pill reminder can be a very difficult memory that won’t allow them to simply forget their illness and live their lives, ”says Colasanti.
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Traylor says she experienced this dilemma.
“For those of us who are struggling to take our medication, we will keep reminding you that on the other hand you are not worthy, that you are not valuable, that you have HIV. But on the other hand, I’m taking this because I have to confirm again … that mine [life is] valuable, ”says Traylor.
The FDA recently approved the first injectable drug (Cabenuva) that only needs to be taken once a month. This can serve as an alternative form of therapy for people who find it a burden to take pills every day to maintain their HIV viral load.
If you have difficulty taking pills for your HIV every day, it is best to ask your doctor if you can switch medications or if you are an option for the injection. Don’t skip doses without first having your doctor do them. If necessary, your doctor can work with you to create the treatment plan that is most suitable for you.
How to live well with HIV
While the medications and your body are working hard to suppress your viral load, it is inevitable that you will experience some form of fatigue, stress, or pain in your daily 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 is very important that you do not skip your medication. When you have a busy schedule, plan and take your pills with you.
Get Mental Health Support. If you feel down or stressed out, let your health team know. They can help you find appropriate mental health experts, such as therapists or psychiatrists, who can help you manage emotional issues.
“For me, mental health therapy is definitely number one,” says Traylor. You can also find a friend or family member to talk about your feelings.
Stop alcohol and drugs. If you smoke or use drugs, it may prevent the treatment from working properly.
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If you are HIV positive it may be a good idea to cut down or quit. If you’re not sure how to get started, speak to your doctor about the resources available that can help you.
Exercise. Try to stay physically active as much as possible. Things like walking, yoga, or gardening can help you relieve stress and tension.
Join a support group. It is important to get in touch with other people who have HIV and can share their life experiences with you. This allows you to feel part of a community.
“There are self-help groups in practically every city. Even if you are out of town, get an HIV care provider and social worker so you can empathize with them, because they are vital, ”says Taege.
Reaching out to others proved to be a lifesaver for Traylor.
“(When) I started sharing my story, I continued to educate myself. I created awareness and got more involved in campaigns. I started asking a lot of questions and I got involved in a lot of church work, ”she says.
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Through her HIV activism, Traylor was able to meet other people who have long-term living with HIV, especially other older black women who have given her hope and the ability to visualize their own life with HIV over the long term.
Practice self-care. Find time to take care of yourself. Eating well and getting plenty of rest can be a form of therapy. Traylor says self-care can be as simple as making it a point to do your nails often to pamper yourself or to take the time to listen to your favorite music.
Get to know your doctor. In order to manage your HIV journey successfully, according to Taege, it is very important to have a solid relationship with your doctor first.
“You have to feel comfortable with the care provider you have chosen. If you feel like I am not the right 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 won’t work for you, ”says Taege.
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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 can become easy over time to see HIV as a treatable, permanent disease like diabetes or high blood pressure that can be easily treated with medication.
“For me as a doctor who has seen the treatment develop and where we are now, this is really easy to say compared to where we have been for two decades. But that’s only lip service to someone who is actually living and fighting in the moment. So I think it’s important to speak to your HIV provider to say, “I have problems and I need help.”
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