If there’s one situation in which people living with HIV need to advocate for themselves, it’s in their relationships with their health care providers. Yet many are reluctant to engage their doctors. After all, the thinking goes, they’re the ones with the medical degree and expertise—they should understand what’s going on, right?
Yes, but health care providers—whether it’s a doctor, physician assistant or registered nurse—aren’t mind readers and can’t answer your questions or concerns unless you make yourself heard.
Like any other partnership, the relationship with your health care provider requires a bit of TLC on both your parts and should be based on openness and good communication. “There needs to be a certain level of comfort and trust in order for the patient to get quality medical care,” says Jennifer Herman-Benalt, LMSW, a former program coordinator for the Women’s Project at Beth Israel Medical Center in New York City.
Communication with health care providers is very much a two-way street. Just as your care provider will have certain expectations of you, you will also have to be honest with the provider about all your questions or concerns regarding care. “Patients need to be their own advocates,” Herman-Benalt says.
Details Matter
It’s crucial for your health care provider to be aware of your medical history, such as previous surgeries, hospitalizations and illnesses (including mental illness) and all over-the counter, prescription and recreational drugs you are taking. “We now deal not only with opportunistic infections and the management of HIV, but also the broad effects of the virus and medications on many parts of the body,” says M. Keith Rawlings, MD, medical director of AIDS Arms Inc. at Peabody Health Center in Dallas. Knowledge of your complete medical history, Rawlings explains, will allow your health care provider to make the best HIV treatment and care decisions based on any other challenges you might face.
In addition, tell your care provider about your family’s medical history—such as relatives with heart disease, diabetes and other health problems—because it can raise your own chances of certain diseases, especially those that can be worsened by HIV and its treatment. “Physicians want to be able to take all these things into account when making recommendations,” Rawlings says.
Of course, this can be a lot of information to recall during an all-too-brief meeting with your provider, so write down as much information as you can before your first or next appointment and bring it with you.
The Whole Truth
The subjects that you feel most uncomfortable talking about might end up being the very factors that affect your HIV care the most—issues like drug use, cigarette smoking, depression and sexual behaviors, to name a few. It’s essential that your health care provider know about these so that he or she can monitor certain aspects of your health more closely and make treatment decisions tailored to meet your needs.
“If you tell me one thing, and something else is the case,” Rawlings says, “it will be hard for me to accurately intervene or make assessments.” At the same time, you shouldn’t feel judged by your health care provider. If you do, remind him or her that it’s difficult to be honest if you’re being made to feel ashamed.
It’s About Trust
You must be willing to trust your doctor’s medical suggestions and opinions. As Rawlings points out, “Coming in with a piece of paper that you got from your cousin’s brother’s friend off the Internet to explain why you’re going to supersede what your health care provider tells you is probably not one of the better ways to establish the kind of relationship you want to have with your provider.”
However, you’re not a silent partner in these decisions—if you have questions, concerns or thoughts of your own when it comes to your care and treatment, don’t hesitate to speak up.
No Two Patients Are Alike
People living with HIV are a diverse group, with each individual having a different history and unique medical needs. In turn, there really isn’t a one-size-fits-all way to monitor your health or treat your HIV infection.
For example, while a once-a-day treatment regimen might be good for some people with HIV, twice-daily treatment might be necessary for others. “While people like to have convenience,” Rawlings says, “it doesn’t necessarily mean that the easiest-possible drug regimen is the most appropriate thing for them.” Working closely with your health care provider is the surest way for you both to make decisions that are best and most effective for you.
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What’s Up, Doc?
The quality of the relationship with your doctor—including how much information you share and how well you advocate for yourself—is critical to long and healthy living with HIV.
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