HIV: Managing Setbacks

If you are HIV positive, it can be difficult to figure out how to get through a time when setbacks make your condition more difficult to manage. Sticking to your treatment, navigating your relationships, and maintaining your overall health during these times can be overwhelming.

But there are ways to get through these tough times.

Keep in touch with your doctor

One of the most important parts of effective HIV treatment is sticking to your medication regimen. If you take your medicine every day and follow your doctor’s instructions, you will help your immune system stay strong so that it is better equipped to fight infections.

If you’re having trouble starting or sticking to any medication, it’s important to talk to your doctor.

“Establish a relationship with a health care provider if you haven’t already. This will ultimately control what your treatment looks like, ”says Brandon Kennedy, a certified mental health therapist.

Kennedy became interested in volunteering with local HIV / AIDS organizations in March 2010. In June of that year, he found out he was HIV positive. In early 2011, he was already doing advocacy work.


But he didn’t stop there.

“I got to the point where I no longer wanted to be the person who referred clients to a licensed mental health counselor,” he says, “I wanted to be the person who sees clients.”

Now he is focused on helping people overcome setbacks that come from all aspects of their lives.

Kennedy says keeping in close contact with your doctor can help:

  • Stay on top of routine tests to make sure your treatment is working as well as possible.
  • Reduce your chances of drug resistance. This is when the HIV virus mutates and your medicines also stop working.
  • Be less likely to pass HIV to anyone you have sex with because you are more likely to follow your treatment plan.

To help make your treatments an easy part of your daily routine, you can:

  • Use a daily pill box to organize your medications.
  • Take your medicine at the same time each day.
  • Have a loved one remind you, set alarms on your phone, or take notes.
  • Plan ahead to get more medications if you travel or can’t get a refill.
  • Keep track of your doctor’s appointments and be sure to schedule them regularly.

Don’t be afraid to change things

Mental and physical care are essential to maintaining a good treatment regimen. The best way to avoid setbacks, Kennedy says, is to look at your self-care as a whole and figure out what’s helpful – and what’s not.

And then take action.

“If you find that you are unable to figure this out, ask for help,” he says. “There are professionals who can help you process, navigate and understand what works and what doesn’t, and how to deliver different interventions tailored to you.”

Maggie White, NP, an infectious disease specialist in Houston, says there are many reasons people may not take their medications consistently, such as:

  • Undesirable side effects
  • Simple forgetfulness
  • Fear of judgment

“Sometimes people don’t take their drugs because they are stigmatized,” White says.

If you missed a dose because of a simple mistake, White says it won’t ruin your entire schedule.

“If you miss a dose, it’s not the end of the world. … It’s when people skip doses all the time, ”she says. When you constantly start or stop drugs, the HIV virus can get worse over time and develop into drug resistance. But anti-HIV drugs are much harder to resist today than earlier drugs.


If you have missed a dose and you are not sure what to do, call your doctor. In most cases, you can take the missed medicine as soon as you remember, unless it is almost time for your next dose. In this case, take the next dose at the scheduled time and skip the missed one.

If you have missed doses regularly, for any reason, see your doctor to check your viral load – the amount of HIV virus in your blood. They will do a blood test to see if your medicine is working well enough or not.

If you have an undetectable viral load, your treatment is controlling your HIV. Your immune system will be better protected and you will not be able to pass the virus on to other people.


But if your viral load is detectable, it’s important to discuss medications with your doctor. They will help you find a better treatment program. This may include adjusting your medicine to make it easier for you to manage it.


You may have become resistant to your anti-HIV medicines. Your doctor may perform drug resistance tests to determine which drugs are working and which are not working for your body.

Another possibility is that your anti-HIV medicine is interfering with other medicines that you are taking.

Most people with HIV will not have symptoms when their viral load increases or when they become resistant to a drug. The best way to find out is to have a blood test. Today, most people with HIV do not develop AIDS. But if you stop your treatment for a long time, it could damage your immune system. This can make you more likely to get certain infections, cancers, or AIDS.

Call your doctor right away if you have:

If you are concerned about your HIV treatment or symptoms for any reason, it is best to talk to your doctor right away. Asking them questions can help you understand what’s going on in your body.


“I say to my patients all the time, ‘I want you to know the good, the bad, and the ugly,’ White says. “I want to be a resource, but I want you to understand what’s going on as much or as little as you want.”

Once your healthcare team finds out why your viral load has changed, they will either advise you on how to continue on the same treatment or start a new medication.

Lean on your circle

Throughout your HIV journey, you may not know how to navigate the next steps. When this happens, breathe and find your support system.

“There is an ebb and flow in life,” says Kalee Garland, an HIV-positive patient and activist. “We can be our own worst enemies. It is important to be mentally healthy, to be open to counseling, and to have good friends that you can count on.


Garland, 34, was born with HIV and has overcome changes throughout her journey with HIV. She says the best way to deal with setbacks is with social understanding.


“HIV is an acronym, and the first word is human. … What if it affects your best friend? What if it affects someone you love? “

A difficult part of failing with HIV is divulging information to other people, especially your partner or those with whom you might have sex.

Garland encourages herself and others to feel empowered during these discussions.

“You never know what you’re going to get. It’s the most vulnerable thing, ”Garland says. “Just try to breathe through. You are emotionally open and honest with them which is the most amazing way to treat a human. “

While you can sometimes receive ignorant responses, she says, it’s important not to cut yourself off from deeper relationships. Garland points out that there are many “emotionally intelligent” people who will accept and support you.

If your viral load is no longer undetectable and you are in a relationship with someone who is HIV negative, this can be difficult to manage. But there are plenty of ways to help you and your partner feel in control.


As a therapist, Kennedy talks to many couples about preventative care they can use if one of their viral loads increases.

“We can talk about condoms,” he says. “But also, we can talk about different creams that are approved. We can talk about PrEP. “

Pre-exposure prophylaxis, or PrEP, is a medicine that people without a virus can take to prevent them from getting HIV. Talk to your medical team.

Whatever the situation, Kennedy believes acceptance is the best way to overcome setbacks.

“Let me accept the fact that this particular thing is going on,” he said. “Only then can I go back and assess. What are the next steps I need to take to keep moving forward? “

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