If you have HIV, it can be difficult to figure out how to navigate through a period of time where setbacks make your condition more difficult to manage. Track your treatment, navigate relationshipsand maintaining your overall health during these times can be overwhelming.
But there are ways to get through these tough times.
One of the biggest parts of efficiency HIV treatment stick to your medication diet. If you take your medicine every day and follow your doctor’s instructions, you will help your immune system stay strong so that he is better equipped to fight off the infection.
If you’re having trouble starting or staying on medication, it’s important to talk to your doctor.
“Establish a relationship with a medical provider if you haven’t already established one. It will ultimately control what your treatment looks like,” says Brandon Kennedy, a Mental Health therapist.
Kennedy became interested in volunteering with local HIV/AIDS organizations in March 2010. In June of that year, he discovered he was HIV-positive. At 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 referred clients to a licensed mental health counselor,” he says. “I wanted to be the person who receives the customers.”
Now he is focused on helping people overcome setbacks that occur in all aspects of their lives.
Kennedy says staying in close contact with your doctor can help you:
- Stay on top of routine tests to make sure your treatment can work as well as possible.
- Reduce your risk of drug resistance. This is when the HIV virus mutates and your medication also stops working.
- Be less likely to transmit HIV to anyone you have sex with because you’ll be more likely to stick to your treatment plan.
To make it easier to integrate your treatments into your daily routine, you can:
- Use a daily pill organizer to organize your medications.
- Take your medication at the same time each day.
- Ask someone close to remind you, set alarms on your phone, or take notes.
- Plan ahead to get more medicine if you are traveling or cannot refill a prescription.
- Keep track of your doctor’s appointments and be sure to schedule them regularly.
Monthly injections are also available instead of pills.
Mental and physical care are essential to maintaining a good treatment regimen. According to Kennedy, the best way to avoid setbacks 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 are not able to understand this, ask for help,” he says. “There are professionals out there who can help you process, navigate, and figure out what works and what doesn’t, and how to offer different personalized interventions for you.”
Maggie White, NP, an infectious disease specialist in Houston, explains that there are many reasons why people may not take their medications consistently, such as:
- Undesirable side effects
- simple forgetting
- fear of judgment
“Sometimes people don’t take their meds because they’re stigmatized,” White says.
If you missed a dose because of a simple mistake, White says it won’t ruin your whole 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 medications, the HIV virus can get worse over time and develop drug resistance. But it is much more difficult to become resistant to HIV drugs today, compared to drugs of the past.
If you miss a dose and don’t know 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 normal scheduled time and skip the one you forgot.
If you regularly miss doses, 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 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 transmit the virus to other people.
But if your viral load is detectable, it’s important to discuss medications with your doctor. They will help you determine a better treatment schedule. This could include adjusting your medications so that they are more manageable.
You may have become resistant to your HIV medications. Your doctor can do drug resistance testing to determine which drugs work and don’t work for your body.
Another possibility is that other drugs are interfering with your HIV medications.
Most people with HIV have no symptoms when their viral load increases or they become resistant to a drug. The best way to find out is to do a blood test. Today, most people living with HIV do not develop AIDS. But if you have stopped your treatment for a long time, it could damage your immune system. It can make you more likely to get certain infections, cancers, or AIDS.
Call your doctor right away if you have:
If you are worried about your HIV treatment or symptoms for any reason, it is best to talk to your doctor straight away. Asking them questions can help you understand what is 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.”
Once your healthcare team finds out why your viral load has changed, they will advise you on how you can continue with the same treatment or prescribe a new medicine.
Throughout your journey with HIV, 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 HIV-positive patient and activist Kalee Garland. “We can be our own worst enemies. It is important to have a strong Mental Healthbe open to adviceand to have good friends to rely on.
Garland, 34, was born with HIV and has overcome the changes throughout her journey with HIV. 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? And if it affects anyone you to like?”
A difficult part of HIV setbacks is disclosing information to other people, especially your partner or those you may have sex with.
Garland encourages herself and others to feel empowered in 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 may get the occasional ignorant response, 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 an HIV-negative person, this can be difficult to manage. But there are plenty of solutions to help you and your partner feel in control.
As a therapist, Kennedy talks to many couples from preventive care that they can use if one of their viral loads goes up.
“We can talk about it condoms,” he says. “But also, we can talk about different creams that are approved. We can talk about that Preparation.”
Pre-exposure prophylaxis, or PrEP, is a drug that people who are not infected with the virus can take to prevent getting HIV. Speak 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 happening,” he says. “Only then can I go back and assess. What are the next steps I need to take to keep moving forward?”