Masonia Traylor was 23 years old when she was diagnosed with HIV in 2010.
“For the first two weeks, I cried every single day,” says Traylor. “I had been thinking about my whole life at the age of 23, and I was so disappointed in myself; I questioned so many of the decisions I made.” [had] to make.”
As Traylor catches up, she discovers she is pregnant two weeks after her HIV diagnosis. More than a decade later, Traylor’s daughter is doing well. But Traylor clearly remembers the tremendous amount of pressure and stress she felt.
An HIV diagnosis is life changing. Once you have it, there is no effective treatment. But with the right kind of 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 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 Tighe, MD, an infectious disease specialist at the Cleveland Clinic in Ohio.
Negative attitudes against HIV are often rooted in misinformation about how the infection is spread. Many believe that it only affects certain groups of people. They often point to gender, sexual orientation, gender identity, race, ethnicity, drug use, or sex work as the reason for the spread of HIV. These situations can cause people with HIV to internalize stigma and cause stress. This “self-stigma” may make them feel afraid to tell loved ones about their HIV status.
Traylor says she felt that way. “I looked at it as a punishment at first,” she says.
Doctors tried to reassure her that she would be fine with timely and proper medical care. But Traylor says it took about a year before she felt ready to share her HIV status. And it took almost 6 years for her to feel “it’s going to be okay.”
“It’s because I wasn’t just physically ill,” Traylor says. “I was working from a broken spirit.”
With HIV, excessive stress can work against your overall health, even if treatment keeps the infection under control.
says Jonathan Colasante, MD, associate medical director of the Infectious Diseases Program at Grady Health System in Atlanta.
While many find an HIV diagnosis a stressful time in their lives, some handle it better, especially if they have a good support system. But Taige 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 handle the diagnosis.
“we [may] They need help not just from social workers, but from specific counselors and psychiatrists, because many of these people need this kind of help.
One study found that too much stress can work against HIV treatment, increasing the viral load in the blood and increasing the likelihood that HIV will progress to acquired immunodeficiency syndrome (AIDS). This is the stage of HIV in which the virus destroys the immune system’s ability to fight infection and may lead to death.
If you’re under a lot of stress and finding it difficult to stay on top of your treatment plan, let your doctor know.
“It’s important to take the bull by the horns, so to speak, in terms of stress, because stress has negative effects on cardiovascular disease, on cancer, and on these other medical conditions that we know HIV positive individuals are at higher risk,” Colasanti says.
HIV treatment includes a medication called antiretroviral therapy (ART), which can control the amount of HIV in the blood, or viral load. Usually, people with HIV can see results starting within 6 months after starting treatment. The amount of HIV can drop enough to become “undetectable,” or undetectable on 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 need to take your medications exactly as prescribed by your doctor. If you miss doses, it may make the virus in your body so resistant to your medication that it won’t work anymore. The virus can then begin to multiply and attack your immune system. This will increase the chances of contracting AIDS. This also means that you can spread it to others.
Currently, most of the medications available are in the form of daily tablets that must be taken once or twice a day orally. While newer medications have greatly reduced side effects for many people, side effects can still occur, including gastrointestinal problems, trouble sleeping, fatigue, and others.
While the side effects can be a stressor, Colasanti says taking a pill every day can become a stressful reminder for some and affect their daily lives.
“They are living with this disease that, as you mentioned, is quite stigmatizing. And so, as much as they want to just live their lives, the daily reminder of their pills can be a very difficult reminder that will not allow them to just forget their illness and live their lives,” says Colasanti.
Traylor says she faced this dilemma.
“For those of us who struggle with taking our meds, they are constantly reminded that on the downside, you are not worthy, you are not valuable, you have HIV, it makes you ‘less than.’ But then, on the flip side, I I take this because I have to reaffirm…that my [life is] value,” says Treylor.
The FDA has approved an injectable HIV drug (Cabenuva), which only needs to be taken once a month. This can be an alternative form of treatment for people who find taking a daily pill to suppress their HIV to be a burden.
If it’s hard for you to take a daily pill for HIV, ask your doctor if you can switch medications or if you’re eligible for injections. Do not miss doses without talking to your doctor first. If needed, your doctor can work with you to come up with a treatment plan that works best for you.
While medications 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 daily life. But there are things you can do to control your symptoms and maintain the best possible health.
Plan ahead. It is very important that you do not skip your medications. If you have a busy schedule, make it a point to plan and pack your tablets to take with you.
Gets Psychological health supports. If you are feeling down or stressed, let your healthcare team know. They can help direct you to appropriate mental health experts such as therapists or psychiatrists who can help you deal with any emotional issues you may be experiencing.
“For me, getting mental health treatment is definitely the number one thing,” says Traylor. You can also find a friend or family member to talk about your feelings.
Stop smoking and drug use. If you smoke or take drugs, this can hinder the treatment from working properly. For alcohol, if you drink a lot or need to stop for health reasons (such as if you have liver disease), your doctor can help you find resources to cut back or quit.
Practice. Try to stay as physically active as possible. Things like walking, yoga, or gardening can help you release stress and tension.
Join a support group. It is important to connect with others living with HIV and they can share their life experiences with you. This may make you feel part of the community.
“Support groups are in almost every city. Even if you’re not in a nearby city, get an HIV caregiver and a social worker, and they can connect you with them because they become so important,” says Taige.
Reaching out to the others proved to be a lifesaver for Treylor.
“(Since I started sharing my story, I was educating myself. I created awareness and started getting more involved in campaigns. I started asking a lot of questions, and I got involved in a lot of 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 envision her life with HIV long-term .
Practice self-care. Find time to take care of yourself. Eating well and getting plenty of rest can be a form of healing. Traylor says self-care can be as simple as making it a point to get your nails done more often to pamper yourself or to make time to listen to your favorite music.
Get to know your doctor. To successfully navigate your HIV journey, Taige says it’s very important to have a strong relationship with your doctor first.
“You have to be comfortable with the caregiver you choose. If you feel like I’m not that right person, let me know and I’ll find someone for you, because if you don’t have a good, solid working relationship with the caregivers, they won’t work for you,” says Taige.
Colasanti agrees that people need to feel free to express their concerns to their doctors. For him, as a physician, it may become easier over time to see HIV as a permanent condition that can be treated like diabetes or high blood pressure that can simply be managed with medication.
“It’s really easy to say that as a clinician who’s seen treatment evolve and where we are now, compared to where we were a couple of decades ago. But that’s just word of mouth for someone who’s living and struggling right now. And so, I think it’s important to have that conversation with your HIV provider. Your humanity to say, “I am suffering, and I need help.”