HIV: Dealing with failure
If you have HIV, it can be difficult to figure out how to get through a period when setbacks make your condition difficult. Having to stick with treatment, navigate relationships, and maintain your overall health during these times can be overwhelming.
But there are ways to get through these challenging times.
One of the biggest parts of effective HIV treatment is adherence to the medication regimen. Taking the medicine every day and following your doctor’s instructions will help your immune system stay strong so it can better fight infections.
If you have problems starting or sticking to your medication, it’s important to talk to your doctor.
“Build a relationship with a health care provider if you haven’t already. Ultimately, that determines what treatment looks like,” says Brandon Kennedy, a licensed mental health therapist.
In March 2010, Kennedy became interested in volunteering with local HIV/AIDS organizations. In June of the same year, he was found to be HIV-positive. At the beginning of 2011, he already carried out advocacy work.
But it didn’t stop there.
“I got to the point where I no longer wanted to be the person referring clients to a licensed mental health counselor,” she says. “I wanted to be the person who welcomes customers.”
He now focuses on helping people overcome failures that come from all areas of their lives.
Kennedy says that staying in close contact with your doctor can help:
- Stay up to date with your routine check-ups to ensure your treatment is working as well as possible.
- Reduce the chance of drug resistance. Then the HIV virus mutates and your drugs don’t work.
- Be less likely to spread HIV to everyone you have sex with because you’re more likely to stick to your treatment plan.
To make treatments part of your daily routine, you can:
- Use a daily pill to organize your medication regimen.
- Take the medicine at the same time every day.
- Ask loved ones to remind you, set an alarm on your phone, or take notes.
- Plan ahead to get more medicine if you are traveling or unable to refill your prescription.
- Keep track of your doctor’s appointments and make sure you schedule them regularly.
Instead of pills, monthly injections are also available.
Mental and physical care is key to maintaining a good regimen. Kennedy says the best way to avoid failure is to look at self-care as a whole and figure out what works—and what doesn’t.
And then take action.
“If you find you can’t figure this out, ask for help,” she says. “There are professionals to help you process and navigate and figure out what works and what doesn’t, and how to come up with different interventions that are customized for you.”
According to Maggie White, NP, an infectious disease specialist in Houston, there are many reasons people don’t keep up with their medications, including:
- Unwanted side effects
- Simple forgetfulness
- Fear of judgment
“Sometimes people don’t take their medication because of the stigma,” says White.
If you miss a dose because of a simple slip-up, White says it won’t ruin your entire schedule.
“If you miss a dose, it’s not the end of the world. … That’s when people miss a dose all the time,” he says. If you keep starting or stopping medication, the HIV virus can get worse over time and become drug resistant. However, HIV drugs are much more difficult to resist today than in the past.
If you have missed a dose and are not sure what to do, call your doctor. In most cases, it is fine to take the missed dose as soon as you remember, unless it is almost time for your next dose. In this case, take the next dose at the usual time and skip the missed dose.
If you consistently miss a dose for any reason, see your doctor to check your viral load – how much HIV virus is in your blood. They will do a blood test to see if your medicine is working well enough or not.
If your viral load is undetectable, treatment will control your HIV. Your immune system will be better protected and you won’t be able to pass the virus on to others.
But if the viral load is detectable, it is important to discuss medication with your doctor. They help you figure out a better treatment schedule. This may involve changing your medication to make it easier to manage.
You may have become resistant to HIV medicines. Your doctor can do a drug resistance test to find out which drugs work and which don’t.
Another possibility is that other medications may interfere with the HIV medication.
Most people with HIV will have no symptoms if their viral load increases or they become resistant to a drug. The best way to find out is a blood test. Today, most people infected with HIV do not develop AIDS. But if you don’t get treatment for a long time, it can damage your immune system. This makes you more likely to get certain infections, cancer or AIDS.
Call your doctor immediately if:
If you’re concerned about your HIV treatment or symptoms for any 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 always tell my patients, ‘I want you to know the good, the bad and the ugly,'” says White. “I want to be a resource, but I want you to understand as much or as much of what’s going on as you want.”
Once your care team finds out why your viral load has changed, they will either give you advice on how to stay on the same treatment or start a new medication.
During your HIV journey, you may be unsure of how to navigate your next steps. When this happens, take a breath—and find your support system.
“There are ebbs and flows in life,” says Kalee Garland, an HIV patient and activist. “We can be our own worst enemies. It is important to have strong mental health, to be open to counseling and to have good friends that we can count on.”
Garland, 34, was born with HIV and has overcome changes throughout her HIV journey. He says the best way to deal with failure is social understanding.
“HIV is an acronym and the first word is man. … What if it affects your best friend? What if it affects someone you love?”
A difficult part of HIV failures is disclosing information to others, especially your partner or those with whom you may be sexually involved.
Garland encourages herself and others to feel empowered during the discussions.
“You never know what you’re going to get. It’s the most vulnerable,” says Garland. “Just try to breathe through it. You are emotionally open and honest with them, which is the most wonderful way to treat people.”
While you may get ignorant responses at times, she says it’s important not to cut yourself off from deeper connections. Garland emphasizes that there are many “emotionally intelligent” people who accept and support you.
If your viral load is undetectable and you are in contact with someone who is HIV negative, it can be difficult to treat. But there are many solutions that can 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 spikes.
“We can talk about condoms,” he says. “But we can also talk about different approved creams. We can talk about PrEP.”
Pre-exposure prophylaxis, or PrEP, is a drug that people without the virus can take to prevent HIV infection. Talk to your medical team about this.
Regardless of the situation, Kennedy believes that acceptance is the best way to overcome failure.
“Let me accept that this particular thing is happening,” he says. “Only then can I go back and evaluate. What are the next steps I need to take to move forward?”