3 in 4 people living with HIV say there’s at least one issue they’re uncomfortable discussing with their healthcare provider (HCP). Having a good relationship with your doctor where you can speak openly will ensure you get the best HIV care for you — read on to find out how you can make this possible.1-4
Being able to talk to your doctor about HIV is important. Talking openly with your doctor can ensure you’re on treatment that works for you, and aligns with your lifestyle, preferences, and long-term health goals.2,4
‘I think through both people trying to have a decent dialogue that people will find the right treatment, find the right time of day to take their pills, find the right way to have conversations with people about their status, but until you talk, none of that can happen.’— Tom Hayes, from THRIVE.5
Mental health support
Helping your doctor to understand who you are can also help them to understand how to support you better, not only with physical health but mental health too.2,3
A supportive doctor should acknowledge your emotional needs and connect you with mental health resources. This can play a key role in your overall well-being.2,4,6
Time for talking freely
Unfortunately, having HIV can still carry stigma. Your appointments with your doctor should be a space for you to have judgement-free conversations.2
Different communities can face different challenges when living with HIV. Your doctor can be on hand to address concerns that are unique to you and your community, and they help ensure your experiences are acknowledged and respected.2
An opportunity to learn more
Your doctor is a wealth of information on HIV, they can help you learn about the condition and educate yourself. Knowing things like what lab tests you’re having, what your medications are and resources available within your community can help you to have meaningful conversations on your HIV care.2,4
Remember, HIV medicines are always evolving and changing, it’s important that you keep up-to-date too!2,4
Shared decision-making
Working together with your HCP to make choices that are right for you is a process called shared decision-making. It’s a two-way conversation where your doctor offers medical guidance and expertise, while you share your values, lifestyle, questions, and what matters most to you. Through honest and respectful dialogue, you can decide together on the prevention or treatment plan that truly fits your life and your goals.2,4
It can feel embarrassing discussing your health and personal details with your doctor, especially aspects such as your mental health, sexual habits or drug use.7
Most doctors are experienced in discussing personal matters and may have encountered people living with HIV with similar circumstances before.2,8 Remember that your HCP is there to help you, is bound by confidentiality and cannot discuss details of your treatment with anybody else without your consent.9
You can also ask your HCP to repeat certain things if you do not understand - it’s your time, so make the most of it.
Questions to ask your doctor
It is encouraged that you ask questions about your HIV care, having an idea of what to ask is a great place to start.4
Here are some example questions:2,10–12
- How will HIV affect my body?
- What can I do to stay healthy?
- Are there side effects of my HIV treatment, and how can I manage them?
- Are there any other medications, recreational drugs or supplements that I can’t take with my HIV treatment?
- How soon can I expect my treatment to start working?
- How can you help me to ensure I take my medications correctly?
- What do my test results mean?
- How can I prevent transmitting HIV to others?
- Do I need to make changes to my daily habits?
- Are there any new HIV treatments that could benefit me?
- What support can I have for my mental health?
- Can I safely have sex?
- Can I get pregnant with HIV?
Remember, if you don’t understand what your doctor has said, it’s okay to ask them to repeat it or explain it in a different way.
Bring support
Consider bringing a friend or peer supporter to your appointment. Their presence might boost your confidence and help you feel more comfortable asking questions or speaking up—especially if you’re newly diagnosed and just beginning your HIV care journey.13,14
Use a conversation guide
A conversation guide is a useful resource that can help you feel confident and more prepared to talk openly with your doctor.
ViiV’s conversation guide offers practical tips for discussing your needs and being an active part of your HIV care.
You can download it to your phone, fill it out, save it for later, or print it to share with your HIV care team.
Whether you are newly diagnosed with HIV or have settled into your treatment and are undetectable, you will likely have regular appointments with your HIV healthcare provider. These appointments are important because they track your progress and ensure your treatment is working for you.12,15
For some people living with HIV, appointments may take place virtually—via phone calls, video calls, or chat messaging. As this may not suit everyone, you can always talk to your HCP about finding a format best suited to you.4,12
Regardless of if it’s virtual or in-person, here are some steps to help you prepare for your appointment:12,13
- Keep a note of your symptoms or concerns prior to the appointment: These may include side effects of your medications, problems with sleeping or eating, intimacy concerns or mental health problems.
- Write down your questions before: This will help you to remember everything whilst in the appointment.
- Make a list of your current medications: A list of all the drugs you're taking, including prescription medication, recreational drugs, supplements and vitamins will be useful for your HCP to take into consideration regarding your HIV care.
In this video, Raif Derrazi and Kimberly Smith share tips on how to start the conversation with your doctor, so you can build a relationship that feels open, strong, and supportive from the start.
WHEN AND HOW OFTEN SHOULD I TALK TO MY DOCTOR?
How often you see your doctor will depend on several factors, including when you were diagnosed, whether you're currently on treatment, and if you're experiencing any health changes, such as illness or pregnancy.15
If you are living with HIV, on treatment, you will typically have check-ups every three to six months. However, if you were recently diagnosed or are starting a new treatment plan, you may need to see your doctor more frequently. You and your HCP will be able to determine how regularly this should be.11,12,15
Aside from your regular appointments, you can contact your doctor to schedule an appointment if:4,5,16
- You’re feeling physically or mentally unwell.
- You notice any new or unusual symptoms.
- Your treatment is affecting your quality of life.
- There are significant changes in your lifestyle or personal circumstances.
REAL CONVERSATIONS BETWEEN PEOPLE LIVING WITH HIV AND DOCTORS
Hearing the experiences of other people living with HIV may make you feel more at ease discussing your health with your doctor.
ViiV partnered with The Skin Deep, an Emmy Award-winning company known for creating content that fosters deep, meaningful conversations. Together, we brought people living with HIV, individuals seeking HIV prevention, and healthcare providers into honest dialogue to explore their relationships and challenge how they discuss HIV treatment and prevention. You can access them on Youtube and on our site too.
Have a look at the real conversations from our partnership with The Skin Deep.
From Stigma to Strength: Women’s Perspectives on HIV
Mercy, born with HIV, and Vanessa, an HIV Healthcare Professional, meet for the first time and discuss the concept of considering more, the need for HIV treatment choice, the impact of both social and self-stigma on maternity and pregnancy and the importance of healthcare professionals getting to know their patients on a personal level to nurture and provide the best possible care for their patients.
Facing HIV: Stories of Support and Safe Spaces
Antar, an advocate for people living with HIV, and Zandraetta, an HIV Healthcare Professional, discuss the difficulty of creating safe spaces—physically, emotionally, and free from judgment—where people living with HIV can openly share their experiences and receive the support they truly need and deserve. They connect through their commitment to sharing prevention and care information about HIV within their communities and the critical need for better conversations about sex and safety.
Navigating HIV Together: A Patient-Doctor Journey
Rebecca and her doctor, Sanjay, discuss how they have built a strong bond that allows them to enjoy each other’s company, be radically honest with one another, and navigate Rebecca’s HIV journey together. They discuss how advances in HIV medicines have transformed many people’s outlook on life, reinforce the importance of openness and clarity between doctors and patients to ensure the best care possible, and talk about the importance of treating the person in front of you and not the diagnosis.
Breaking Barriers: A Conversation on HIV Prevention and Inclusive Healthcare
Angélique and Mikki have known each other for several years. Their work focuses primarily on HIV prevention and creating safe spaces where HIV patients feel comfortable enough to be honest and open about their experiences and circumstances. Together they have a powerful discussion about the need for more inclusive healthcare practices, where people feel acknowledged, respected and listened to.
I Am More Than My Diagnosis: Living with HIV
Virgil, a single father speaks about the judgment and inequality that he and other people living with HIV often face. Lance shares his approach to patient care, emphasising the importance of seeing and addressing the person and their humanity before their diagnosis. Both acknowledge each other’s perspectives and experiences, relating to stigma and the misunderstanding around HIV that continues to fuel their commitment to their important work.
Passion And Purpose: Supporting Those Living With HIV
Chris, advocate living with HIV, and his colleague Marta, HIV Healthcare professional, have worked together for 4 years. They explore how Marta discovered her purpose and began her trajectory into HIV medicine, and discuss how Chris’s own HIV diagnosis kickstarted his journey into advocacy. While they’ve faced numerous challenges in their work, their shared passion and commitment have helped them overcome obstacles and inspire many. Their tireless efforts contribute to reducing stigma and making life easier for those affected by HIV.
Abbreviations
HCP, healthcare provider; LGBTQ, lesbian, gay, bisexual, transgender, queer.
References
- POSITIVE PERSPECTIVES STUDY, WAVE 2 RESULTS REPORT a View into the Lives of People Living with HIV CONTENTS. Available from: https://viivhealthcare.com/content/dam/cf-viiv/viivhealthcare/en_GB/files/211203-updated-pp2-report-v9.0.pdf [Accessed: August 2025]
- Fine S, Vail R, Merrick S, et al. Clinical Guidelines Program Approach to Shared Decision- Making. Available from: https://www.hivguidelines.org/wp-content/uploads/2023/08/NYSDOH-AI-Clinical-Guidelines-Program-Approach-to-Shared-Decision-Making_9-14-2023_HG.pdf [Accessed: August 2025]
- Downes R, Foote E. HIV Community Clinical Nurse Specialists, Liverpool University Hospitals, NHS Foundation Trust. HIV and Communication Skills for Practice. HIV Nursing. 2019; 19(4): 86–93. https://www.nhivna.org/file/5e304057f02db/HIV-Nursing-19-4-CPD-article.pdf
- Okoli C, Brough G, Allan B, et al. Shared Decision Making Between Patients and Healthcare Providers and its Association with Favorable Health Outcomes Among People Living with HIV. AIDS and Behavior. 2020;25(5):1384-1395. doi:https://doi.org/10.1007/s10461-020-02973-4
- Hayes T. HIV Has Changed ¦ ViiV Healthcare. Available from: https://viivhealthcare.com/about-hiv/living-with-hiv/talking-to-your-doctor/start-conversation/ [Accessed: September 2025]
- Okonji EF, Mukumbang FC, Orth Z, et al. Psychosocial support interventions for improved adherence and retention in ART care for young people living with HIV (10–24 years): a scoping review. BMC Public Health. 2020;20(1). doi:https://doi.org/10.1186/s12889-020-09717-y
- Hurtaud A, Laurent C, Leïla Bouazzi, Merland ET, Barbe C. Factors associated with unvoiced concerns of patients attributed to embarrassment, modesty or a fear of being judged. BMC Primary Care. 2025;26(1). doi:https://doi.org/10.1186/s12875-025-02804-2
- NIH. National Institute of Aging. How To Talk With Your Doctor About Sensitive Issues. Available from: https://www.nia.nih.gov/health/medical-care-and-appointments/how-talk-your-doctor-about-sensitive-issues [Accessed: September 2025]
- Terrence Higgins Trust. Healthcare and insurance. 2022. Available from: https://www.tht.org.uk/hiv/being-diagnosed-hiv/telling-people/healthcare-and-insurance [Accessed: September 2025]
- Kim GS, Choi JP, Yi JM, Shim MS. Development of a Question Prompt List for Patients Living With HIV and Assessment of Their Information Needs. The Journal of the Association of Nurses in AIDS Care : JANAC. 2019;30(5):575-583. doi:https://doi.org/10.1097/JNC.0000000000000080
- National HIV Curriculum. Wood B. Core Concepts - Switching or Simplifying Antiretroviral Therapy. 2025. Available from: https://www.hiv.uw.edu/go/antiretroviral-therapy/switching-antiretroviral-therapy/core-concept/all [Accessed: August 2025]
- HIV. gov. Seeing Your Health Care Provider. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/provider-visits-and-lab-test/seeing-your-health-care-provider [Accessed: August 2025]
- CDC. Talk HIV. Available from: https://www.cdc.gov/stophivtogether/talk-hiv/index.html [Accessed: September 2025]
- Øgård-Repål A, Berg RC, Fossum M. Peer Support for People Living With HIV: A Scoping Review. Health Promotion Practice. Published online October 23, 2021:152483992110498. doi:https://doi.org/10.1177/15248399211049824
- Terrence Higgins Trust. Your HIV clinic. Available from: https://www.tht.org.uk/hiv/living-well-hiv/healthcare/your-hiv-clinic [Accessed: September 2025]
- HIV.gov. Making Care Work for You. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/provider-visits-and-lab-test/making-care-work-for-you?utm_source=chatgpt.com [Accessed: September 2025]
NP-GBL-HVU-WCNT-250011 | November 2025
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