Does Your Partner Need to be Educated About HIV?

My clients who are living with chronic conditions often talk about how their partners don’t really understand what they’re dealing with. They may feel unsupported, as if their partners want to pretend that HIV means nothing more than needing to take a daily “vitamin.” Or on the other hand, they may feel micromanaged, with their partner constantly worrying about them. 

If you and your partner are in one of those camps, or someplace in between here’s a request for you to present to your partner: 

“What if I accompanied you to your next doctor’s appointment. With your permission, of course. The three of us could talk about your new regimen. You doctor could answer our questions and we could both hear the same information. And he could give me some ideas on how to support you.” 

What do you think? Have you ever thought of sitting down together and having a chat with your doctor? 

There are a lot of benefits to the three of you having a meeting together. For one thing, you would both have the same information. That means that, if you’re living with HIV, you don’t have to try and translate medical information. Your partner would get it straight from the doctor. Also, your physician has a unique perspective on what it takes to live with your diagnosis. He/she could explain how your condition and its treatment impacts you not only physically but emotionally. And the three of you could talk about how you and your partner can work together in a way that both of your needs are recognized and accommodated. 

After all, when one member of the home is living with a chronic condition, everybody is living with it. 

Sound like a good idea? Here’s how to organize a doctor’s visit with you and your partner: 

Make sure you are both comfortable with this. You may feel that your time with your doctor is yours alone, and not something you want to share. Or you may have a concern over how your partner may behave in the meeting, e.g. dominate the conversation or express criticism of your doctor. Essentially, both you and your partner need to be willing to come to the meeting with a spirit of cooperation and an open mind. 

Ask your doctor. When you call to set up the appointment, make sure the physician is made aware that your partner will be accompanying you and is comfortable with that. You may want to ask his/her receptionist to check in with the doctor before the appointment time is finalized. Also, be aware of how much time your physician has available, so that you can prioritize your goals for the conversation accordingly. 

Set some ground rules. You and your partner should be clear with each other on the level of participation you will both have. Will one of you lead the conversation? Who will ask the questions, or will you share that task? Other ground rules might include not dredging up issues from the past that either of you have regarding your doctor’s decisions, or otherwise lodging complaints. That is, unless you both decide that there are concerns the doctor needs to be aware of. You know your doctor but your partner may not, so you will most likely also be aware of the best way to approach this discussion. 

Make a list of questions. Keep in mind that you will have limited time.  And your doctor’s answers may be more detailed than you expected. So decide together on what the most important questions are. After you have created your list, review it from the perspective of how much time you will have. You may want to arrange the questions in order of priority. You might also want to consider typing out the list and giving your doctor a copy.

Be clear with your doctor. At the beginning of the meeting, clarify why you are both present and what you are hoping to accomplish. It will help your doctor to be more open if you make sure he/she understands this is a meeting to gain knowledge and increase cooperation and not to ambush them with complaints and criticism. Keep in mind that enlisting your partner can have a positive impact on your adherence, and this benefits not only you but your doctor by making his/her job that much easier. So hopefully your physician will also view this as a good use of their time. 

Try to leave with a clear direction. You might base this on your overall goal. For example, are you there to understand something specific about the diagnosis? Or how to best be adherent with treatment? Or with a greater awareness of what to plan for going forward. This might require asking our doctor for clarification, and then checking in with each other to make sure you are all on the same page. In other words, do what you can to make the best use of this time. 

A meeting of the minds benefits you, your partner, and your doctor. Sit down together and talk things out. Take time to understand each other’s perspective and role in helping you to manage your chronic condition. Doesn’t it make sense to have some face time together? After all, the three of you are on the same team. 

Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.