5 Tips to Bridge the Gap With Your HIV Health Care Team

Josh Middleton with his healthcare team
Scripps Green Hospital La Jolla Infectious Disease Department

Bridging the gap with your health care team can seem like a daunting task. After all, they are the experts who spent years in school and have all the answers, right? It's natural to sense an us-versus-them mentality; however, this is not how the relationship should function.

As the old saying goes, there is no "I" in team, and this is especially true in the world of health care.

Each individual member of your health care team has a unique role, from you to the doctor, nurses and medical assistants. Similar to a recipe, one cannot expect the finished product to come as desired if ingredients are missing or not mixed together properly.

Here are five valuable tips I have found helpful in my time living with HIV, and it's my hope they can be useful to you, as well. Since we live with HIV, we tend to find ourselves at the doctor a tad more than our HIV-negative counterparts. By taking these simple steps, we can make the most of our experience and strengthen the physician-patient relationship.

1. Find a Doctor Who Is a Good Fit for You

This may seem like a no-brainer but, believe it or not, I have many HIV-positive friends who stay in care with a doctor with whom they just don't click. Choosing a doctor is more than just looking at his or her experience in the field of HIV. Maybe you would prefer a male or a female doctor or one who is older or younger? Depending on your sexual orientation, perhaps you would prefer a doctor who is LGBTQ friendly? Would you prefer someone who is more hands-on or someone who is more laid back?

An HIV specialist should be someone who cares about you in the fullest sense and utilizes integral care to focus on both your physical and mental health. They should listen, be punctual, have a good bedside manner and have your best interest at heart as a person -- not simply as another patient on their list of daily appointments. Although it may take time to find the physician who is right for you, when all is said and done, it will be well worth it.

2. Build Trust and Understanding

Every relationship requires trust, and this is particularly true of the connection that doctors and patients build together. Although relationships can take time to build, they start with an honest and open conversation. HIV discussions often involve topics that are sexual in nature and ones that you understandably might not discuss outside the bedroom.

It's important to know that your privacy and confidentiality are protected by HIPPA laws and that your doctor doesn't want to know this information to pry or make you feel uncomfortable, but rather to provide you the best possible care. That doesn't mean you need to hand over your black book of hookups throughout the years or go into vivid detail about every sexual act you have ever engaged in; however, you should reach the point where you feel comfortable talking with your doctor about your sexual health.

Take it a step at a time. It's been my experience that after a while it becomes much like a friendship. You can talk about anything with a good friend because you have built trust. The same goes for your HIV specialist. They are non-biased third parties, and if they aren't, get a new one.

It's not just a one-way street either, where you spill the beans and are left feeling empty. Take some time to get to know your doctor. You don't need to know their favorite color or which team they rooted for in the last Super Bowl, but even a quick minute spent talking together can make a big difference in overcoming that sense of awkwardness that one naturally feels when visiting a physician. Doctors are people too, and we often forget that.

3. Ask Questions

Have you ever left your doctor's office with more questions than answers? Did you have questions in mind you wanted to go over during the appointment, but somehow along the way you didn't get to them? Well, this tip is for you: It's vital that you ask questions.

It helps me to have a written list, so I can go through my questions one by one with the doctor. It's akin it to a job interview that, to people's surprise, should be more like a conversation than a monologue. Don't be embarrassed to ask; take the leap and let the words flow out. Chances are you aren't the first to ask the same question.

4. Get to Know Your Support Staff

The first person you see when you go to your HIV specialist's office is most likely not your doctor. It may be a medical assistant, nurse or other health care professional who assists the doctor. Since you will be dealing with them on a regular basis, whether it be setting an appointment, requesting lab work results or relaying messages to your doctor, take a moment to build a relationship with support staff, as well. They do a lot of behind-the-scenes work, and building connections with them is important if you want to get the most from your relationship with your health care team.

5. Become Your Own Patient Advocate

We have to become patient advocates because we, not our doctors, are in control of our health. This starts with educating ourselves about what we are up against. It doesn't take a biology major or rocket scientist to understand the basics. Your doctor can help educate you, and if you do your own research as well, then you are setting yourself up for success. TheBody.com has some great resources and even a Q&A section that can help you learn more about HIV.

Advocating for yourself doesn't necessarily mean taking an aggressive approach, but rather an assertive one. I learned this myself a couple years ago due to my experience with debilitating side effects from a certain HIV medication. Although it worked great numbers-wise, I could no longer take the negative impact on my quality of life. I demanded a change from my doctor and assured him that, after over a year of trying to let my body adjust, it was now time to try something new. Engaging with your doctor and using effective communication to address your concerns will help you both in the short and long run.

We don't just let doctors treat us. We have to teach them how we want to be treated.