If you have HIV, it can be tough to figure out how to navigate through a period of time when setbacks make your condition harder to deal with. Sticking with your treatment, navigating relationships, and maintaining your overall health during those periods can be overwhelming.
But there are ways you can get through those challenging times.
Stay in Touch With Your Doctor
One of the largest 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’ll help your immune system stay strong so that it's better equipped to fight infection.
If you're having trouble starting or sticking with a medication, it’s important to talk to your doctor about it.
“Establish a relationship with a medical provider if you haven't established one already. That's ultimately going to 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 that he was HIV-positive. By the beginning of 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 gave clients over to a licensed mental health counselor,” he says, “I wanted to be the person who's receiving the clients.”
Now, he focuses on helping people overcome setbacks that come from all aspects of their lives.
Kennedy says that staying in close touch with your doctor can help you:
- Stay on top of routine testing to ensure that your treatment can work as well as possible.
- Lower your chances of drug resistance. That's when the HIV virus mutates and your meds stop working as well.
- Be less likely to spread HIV to anyone that you're having sex with because you'll be more likely to stay with your treatment plan.
To help make your treatments an easy part of your day-to-day routine, you can:
- Use a daily pill box to organize your medication.
- Take your medication at the same time every day.
- Ask a loved one to remind you, set alarms on your phone, or make notes.
- Plan ahead to get more medication if you’re traveling or won’t be able to refill a prescription.
- Keep track of your doctor’s appointments and make sure you schedule them routinely.
Don't Be Afraid to Change Things Up
Mental and physical care are crucial 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 isn't.
And then, take action.
“If you find that you're not able to figure that out, seek help,” he says. “There are professionals who can help you process, navigate, and figure out what's working and what's not working, and how to come up with different interventions that are custom for you.”
Maggie White, NP, an infectious disease specialist in Houston, says there are plenty of reasons that people may not take their medicine consistently, like:
- Unwanted side effects
- Simple forgetfulness
- Fear of judgment
“Sometimes people don't take their medication because there's a stigma attached to it,” White says.
If you missed a dose because of a simple slipup, 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 are skipping doses all the time,” she says. When you constantly start or stop medication, the HIV virus can get worse over time and develop into drug resistance. But HIV medications are a lot harder to become resistant to today, compared to past drugs.
If you’ve skipped a dose and are unsure of what to do, call your doctor. In most cases, it’s OK to take the missed medication as soon as you remember, unless it’s almost time for your next dose. In this case, take the next dose at the normal scheduled time and don’t take the missed one.
If you’ve missed doses consistently, for whatever reason, see your doctor to check your viral load -- how much of the HIV virus is in your blood. They’ll do a blood test to see if your medication 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 won’t be able to spread the virus to other people.
But if your viral load is detectable, it’s important to discuss medication with your doctor. They’ll help you figure a better treatment schedule. This might include adjusting your medication so that it’s easier for you to manage.
You may have become resistant to your HIV drugs. Your doctor can do drug resistance testing to figure out which drugs work and don’t work for your body.
Another possibility is that your HIV medication is interfering with other medicines you take.
Most people with HIV won’t have symptoms when their viral load goes up or they become resistant to a drug. The best way to find out is through a blood test. Today, most people with HIV don’t develop AIDS. But if you’ve been off your treatment for an extended period of time, it could damage your immune system. This can make you more likely to get certain infections, or cancers, or AIDS.
Call your doctor right away if you have:
- Repeated fevers
- Swollen lymph glands
- Persistent diarrhea
- White spots or abnormal wounds on your mouth or tongue
- Constant fatigue
- Rashes or bumps
- Weight loss
If you’re worried about your HIV treatment or symptoms, for whatever reason, it’s best to talk to your doctor right away. Asking them questions can help you understand what’s going on in your body.
“I tell 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.”
After your care team discovers why your viral load has changed, they’ll either advise you on how you can stay on the same treatment or start you on a new medication.
Lean on Your Circle
Throughout your HIV journey, you may not be sure how to navigate the next steps. When that happens, take a breath -- and find your support system.
“There’s an ebb and flow in life,” says Kalee Garland, an HIV patient and activist. “We can be our own worst enemies. It’s important to have strong mental health, to be open to counseling, and to have good friends you can rely on.”
Garland, 34, was born with HIV and has overcome changes throughout her HIV journey. She says the best way to deal with setbacks is through social understanding.
“HIV is an acronym, and the first word is human. ... What if it affects your best friend? What if it affects somebody you love?”
A difficult part of HIV setbacks is disclosing information to other people, especially your partner or those you may have a sexual relationship with.
Garland encourages herself and others to feel empowered when having those discussions.
“You never know what you’re going to get. It’s the most vulnerable thing,” Garland says. “Just try to breathe through it. You are being emotionally open and honest with them, which is the most amazing way to treat a human.”
While you may get occasional ignorant responses, she says, it’s important not to cut yourself off from deeper relationships. Garland emphasizes that there are many “emotionally intelligent” people who will accept and support you.
If your viral load is no longer undetectable and you’re in a relationship with someone who is HIV-negative, it can be difficult to deal with. But there are many solutions to help you and your partner feel in control.
As a therapist, Kennedy speaks to many couples about preventative care they can use if one of their viral loads goes up.
“We can talk about condoms,” he says. “But also, we can talk about different creams that are approved. We can talk about PrEP.”
Pre-expose prophylaxis, or PrEP, is medication that people without the virus can take to prevent them from getting HIV. Talk with your medical team about it.
Regardless of the situation, Kennedy believes that acceptance is the best way to overcome setbacks.
“Let me accept the fact that this particular thing is happening,” he says. “Only then am I able to go back and evaluate. What are the next steps that I need to do to continue to move forward?”
Brandon Kennedy, mental health therapist, HIV advocate, Atlanta.
Maggie White, NP, Houston, TX.
Kalee Garland, HIV advocate, San Diego, CA.
National Institutes of Health: “Following an HIV Regimen: Steps to Take Before and After Starting HIV Medicines,” “HIV Treatment Adherence.”
HIV.gov: “Drug Resistance,” “Pre-Exposure Prophylaxis.”
Avert: “Adherence and Dealing with Side-Effects of Antiretroviral Treatment for HIV,” “What is an Undetectable Viral Load.”
San Francisco AIDS Foundation: “Here’s what you need to know about HIV drug resistance.”
Mayo Clinic: “HIV/AIDS.”