Maybe you recently learned that you have HIV. First of all, relax! You’ve got this. HIV treatment options today are, by and large, plentiful, highly effective, easy to take and free of side effects, including newer options, such as long-acting injectables. You can have as long and healthy a life as anyone else.
But one thing you absolutely need is a solid care team made up of an HIV-savvy primary care provider and other folks looking out for you, like a counselor or therapist, social worker and dentist as well as an ob-gyn, gerontologist or other specialist depending on who you are. If your team is already in place, great! But if you need to put one together, you can start by visiting HIV.gov or the POZ Health Services Directory.
Either way, first and foremost, “you need to build a trusted relationship,” says Charlene Flash, MD, president and CEO of Avenue 360 Health & Wellness, a nonprofit health system with about 1,000 patients living with HIV, most of them Black and Latino and many of them LGBTQ. “You need to have a provider with whom you can candidly share what’s happening in your life—and what you are and are not able to do. It’s not useful to hide that you can’t or won’t take your meds for some reason or that you’re having side effects. There need to be open lines of communication and mutual trust.”
According to Flash, that means feeling like you can ask your providers anything. “They may not have the answer right away, and that’s OK if they follow with, ‘Let me figure it out, and we’ll talk about it at your next visit.’” Flash, who, despite her leadership role at 360, still sees patients, says, “I believe I’m in a partnership with the patient. There’s shared decision-making. I spend time educating my patients so we can have a real conversation. I give them copies of their labs and teach them how to read them so they can be successful wherever they go because they’re learning to engage in their own care.”
What if, for whatever reason, you don’t like your provider? Talk about it with them, respectfully but honestly, before moving on, says Flash. “You can say to them, ‘I feel as though you’re not listening,’ or ‘You’re not explaining this so I can understand it.’ They may honestly not know. And not every provider has mastered the art of making you feel like you’re the only person in the world, which is something you can actually do in a 30-minute or five-minute visit.”
Flash says she always sits down at eye level with a patient and starts with an open question, such as a simple “How are you?” or “What’s going on with you?” She says, “I let them talk, allow them to feel heard—then I can get to my list of things we have to hit.”
If communication doesn’t work, it’s fine to look for a new provider. But, says Flash, “don’t fire your provider until you’ve linked to care elsewhere, because you don’t want a gap.”
And when it comes to uncomfortable stuff—depression and anxiety; drug or alcohol use; past trauma or violence or other strife at home—don’t hold it back from your provider. “Absolutely be open, so we can help you,” says Flash. “I’ll ask, ‘I sense that you’re feeling down. Can you tell me about that?’ Or ‘When was the last time you had a cigarette, drank or used drugs?’ I’m not being judgmental. I tell my patients, ‘This is a safe space where you can get help if you need it.’”
If you can, Flash advises, write up a list of everything you want to discuss with your provider before your visit, including all the prescribed and over-the-counter meds you’re taking. “I love it when patients come with their questions,” she says. “It helps focus the conversation.”
Your relationship with your providers is a partnership. So let honesty, respect and open lines of communication help you build the best one you can. “Your provider should be your coach and your number one cheerleader—not your judge,” says Flash. So put the effort in to get to that point. You’re worth it!