Masonia Traylor was 23 when she was diagnosed with human immunodeficiency virus (HIV) in 2010.
“The first two weeks, I just cried every day,” Traylor says. “I was thinking about my whole life at 23 and I felt really disappointed in myself; questioned many of the decisions that I have [had] do.”
While Traylor was finding out, she found out she was pregnant 2 weeks later HIV diagnosis. More than a decade later, Traylor’s daughter is healthy. But Traylor clearly remembers the enormous amount of pressure and stress she felt.
A HIV diagnosis life changing. Once you get it, there is no effective cure. But with the right kind of medical treatment, you can keep the virus count in your blood weak and live a long and healthy life without the risk of infecting others.
While medical advances have dramatically improved life expectancy, stigma and stress resulting from an HIV diagnosis can further affect your quality of life.
“This [HIV] impacts many, many things: your dynamic with your friends, your family, your workplace, and that leads to a lot 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 how the infection spreads. Many believe it only affects certain groups of people. They often point to sex, sexual orientationgender identity, race or ethnicity, drug use or sex work as cause of HIV broadcast. These attitudes can cause people living with HIV to internalize stigma and cause them stress. This “self-stigma” can lead them to be afraid to tell loved ones about their HIV status.
Traylor says she felt like that. “I saw it as a punishment at first,” she says.
Doctors tried to assure her that with proper and timely medical care, she would be fine. But Traylor says it took about a year before she felt ready to share her HIV status. And it took almost 6 years to feel that she was “going well”.
“It’s because I wasn’t just physically sick,” Traylor says. “I was operating from a broken spirit.”
With HIV, too much stress can affect your overall health, even if treatment gets your infection under control.
“When the body is under significant stress, it can lead to inflammationwhich can trigger a whole series of cascades in the body that, in a nutshell, make other chronic diseases more likely or worse,” says 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 handle it better, especially if they have a good support system. But Taege says it’s important to assess her patients’ state of mind early on to help them cope with stressors.
When he meets someone newly diagnosed with HIV, he says he tries to find out what she knows about the disease and how she is dealing with 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 has found that too much stress can interfere with HIV treatment, increasing the viral load in the blood and increasing the likelihood that HIV will progress to acquired immune deficiency syndrome (AIDS). This is the stage of HIV where the virus destroys the immune systemfight 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 is important to take the bull by the horns, so to speak, in terms of stress, because stress has negative effects on heart diseaseand on cancerand about those other medical conditions that we know individuals living with HIV are at higher risk,” says Colasanti.
HIV treatment uses a drug called antiretroviral therapy (ART), which can control the amount of HIV in your blood or your viral load. Usually, people living with HIV can see the results manifest within 6 months of starting treatment. The amount of HIV may become low enough to become “undetectable” or impossible to detect 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 have to take your medication just as your doctor prescribed. If you miss doses, it can make the virus in your body resistant to your medications, so it no longer works. The virus can then begin to multiply and attack your immune system. This will increase your chances of developing AIDS. It also means you can broadcast it to others.
Currently, most medications available come in the form of daily pills that you need to take once or twice a day by mouth. Although the new medications have significantly reduced side effects for many people, it is still possible to experience side effects, including digestive issues, trouble sleeping, fatigue, and more.
While the side effects themselves can act as a stressor, Colasanti says popping a pill every day can become a painful reminder for some and affect their daily lives.
“They live with this disease which, as I mentioned, is still quite stigmatized. And so, even if they just want to live their life, this daily pill reminder can be a very difficult reminder that won’t allow them to forget about their illness and live their life,” says Colasanti.
Traylor says she has experienced this dilemma.
“For those of us who have trouble taking our meds, you’re constantly reminded that on the negative side, you’re not worthy, you’re not valuable, you have HIV, it makes you ‘less that’. But then, on the other hand, I take that because I have to reaffirm…that my [life is] valuable,” says Traylor.
The FDA has approved the injectable HIV drug (Cabenuva), which only needs to be taken once a month. It can be an alternative form of therapy for people who find taking daily HIV suppression pills a burden.
If it is difficult for you to take pills every day for your HIV, ask your doctor if you can switch medications or if you are eligible for the injection. Do not skip doses without talking to your doctor first. If necessary, your doctor can work with you to develop the treatment plan that is best for you.
While the medications and your body are working 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.
You can:
Plan ahead. It is very important that you do not skip your medications. If you have a busy schedule, be sure to plan ahead and pack your pills to take with you.
Get Mental Health support. If you feel depressed or stressed, talk to your healthcare team. They can help guide you to Mental Health experts like 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 number one thing,” Traylor says. You can also find a friend or family member to talk about your feelings.
Quit smoking and drug addiction. If you smoke or take drugs, this may prevent your treatment from working properly. When it comes to alcohol, if you drink too much or need to quit for health reasons (such as 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, yogaor gardening can help you release stress and tension.
Join a support group. It is important to connect with other people living with HIV and to be able to share their life experiences with you. It can make you feel part of a community.
“Support groups exist in almost every city. Even if you’re not in a nearby town, contact an HIV care provider and social worker, and they can hook you up with these services as they become critically important,” says Taege.
Reaching out to others proved to be a lifeline for Traylor.
“(As) I started to share my story, I was training myself. I created awareness and started to get more involved in campaigns. I started asking a lot of questions and I am involved in a lot of 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 an opportunity to visualize her own long-term living with HIV.
Take care of yourself. 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 getting your nails done often for pampering or making time to listen to your favorite. music.
Get to know your doctor. To successfully navigate your HIV journey, Taege says it’s very important to have a strong relationship with your doctor first.
“You need to be comfortable with the care provider you choose. If you think I’m not the right fit just let me know and I’ll find someone for you, because if you don’t have a good, solid working relationship with your healthcare providers, it won’t 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, it can become easy over time to see HIV as a long-lasting disease that can be treated like diabetes Or high blood pressure which can simply be managed with medication.
“It’s really easy to say for me as a doctor who has seen the treatment evolve and where we are now, compared to where we were 2 decades ago. But that’s just lip service to someone who’s living and struggling right now, and so I think it’s important to have that conversation with your HIV provider to say, “I’m struggling and I need help.”