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Human immunodeficiency virus (HIV) is not the easiest topic to talk about. While there has been progress in reducing the stigma around HIV, the stigma continues to exist, and it continues to be a challenge for many people living with HIV and their healthcare providers.
Stigma can damage a person’s mental health, causing feelings of low self-worth and isolation. It can make a person less likely to seek testing or treatment. It can make a person less likely to be honest when talking to their healthcare provider.
Even without stigma, HIV is a health condition. Health is a very personal topic, and talking openly about a health condition can often make a person feel shy or uncomfortable.
If you have ever found yourself having a difficult time talking openly with your healthcare provider—whether when discussing HIV or another topic related to your health—the following strategies may help.
Identify what’s difficult to discuss
Different topics make different people uncomfortable. It’s important to identify the specific topic or topics that you find difficult to discuss with your healthcare provider. Some examples of potentially uncomfortable topics include:
- The highly personal. This can include topics like sexual history, mental health, and substance use, which often come up in patient-provider conversations around HIV.
- Finances. This is another incredibly personal topic. Many people have difficulty paying for HIV medications, and for many people, it’s not an easy topic to discuss.
- Treatment adherence. To successfully treat HIV, a person needs to take every dose of their medication and take every dose on schedule. Because adherence is such an important element of treatment, it can be difficult to discuss when it has not been going perfectly.
- Embarrassing symptoms. Like many health conditions, HIV is associated with several embarrassing symptoms, such as diarrhea and skin problems. These can be a symptom of HIV or a side effect of HIV treatment.
- Not knowing the words. Sometimes, a person may feel embarrassed that they do not know the medical terminology, or they may feel self-conscious asking a question about something they don’t fully understand.
These are just a few examples. Everyone’s experience is different. Take some time to think about your answers before your next appointment. Writing down the things you need to discuss can also help.
At your appointment, you can tell your healthcare provider that you want to discuss something you’re uncomfortable talking about. Your healthcare provider has treated other people with HIV, and they have experience talking about many different aspects of living with HIV. They may have strategies to help make the conversation easier.
Remember why honesty is so important
To provide you with the best care possible, your healthcare provider needs to know about anything that can interfere with how well you follow your treatment plan. Remember that your healthcare provider is there to help you find solutions, they are not there to judge you. Also remember that any information you share is confidential.
When a person with HIV skips doses of a medication, takes medication inconsistently, or takes a break from medication, serious problems can occur. Viral load can increase and damage the immune system. The infection can become resistant to treatment. There is a greater risk of transmitting the virus to other people.
Find the right healthcare provider
One of the best strategies for being honest with your healthcare provider is to find a healthcare provider you feel comfortable with. Ideally, you want to be able to tell your healthcare provider anything—and while it may take time before you are comfortable enough, the potential needs to be there early on.
Lack of trust in healthcare providers and the healthcare system is another reason why a person might withhold information from their healthcare providers. There are many people who have had negative experiences with the healthcare system in the past. If you’ve had negative experiences in the past, this is another topic you may want to discuss with your current healthcare provider.
If you feel judged by your healthcare provider, face discrimination, or find that you just cannot talk to your healthcare provider about your experiences or concerns, consider looking for a different healthcare provider.
Connect with other people who have HIV
A good way to get comfortable talking about any topic related to HIV is to connect with other people who have HIV—after all, they are the only people who can truly know what the experience is like.
If you aren’t already, consider participating in a meetup or support group, either one that meets in person, or one that communicates online.
