I could tell you a million things I know now that I wish I knew then, but if you only remember one thing, remember this:
As someone living with HIV, you will face challenges throughout your life, but you are strong and you will overcome every hurdle to build the life you want.
Before you get there, I have a few things to ask of you...
You are in control – don’t let fear win
I know you’re afraid, but whatever you do, don’t let fear win, reaching out will help you feel in control and empowered. From your doctor to your friend to your colleagues, there are many people out there ready to offer support.
If you don’t understand something your doctor is saying, ask questions. They are there to listen to you as much as you need to listen to them. Empower yourself and look for the information you need, it’s out there - from open and honest discussions to visual aids and online forums. Go and seek the answers you need - find the help you need in a way that makes sense to you.
Remember, you are not alone.
Have regular and honest conversations with your doctors and healthcare providers, so that they can help you lead the life you want. Tell them your goals, dreams, and ambitions, because the more they know about you, the more they can adapt care and treatment to fit your lifestyle. Never let HIV define who you are, you are so much more than just someone living with HIV.
Think of the big picture
Make sure to plan ahead and work with your healthcare team so you have a plan in place for the way your healthcare needs will change in the future. Talk to them openly about things that keep you awake at night, like worries about transmission and take control of your fears. Being informed and prepared will help you lead a fuller, healthier life.
Make sure to talk to your doctors, sometimes your treatment won’t agree with you – but don’t suffer in silence. You will quickly learn that your health is impacted by more than just HIV. Learn to connect the dots between your different doctors to help improve the flow of information between every health professional you see, from your gynaecologist and your nephrologist to your GP and your HIV specialist. Think of them as your health network, so don’t be afraid to be proactive and mention things even if they’re minor. The more open you are, the more engagement and specialised care you will get in return.
Speak up and let your healthcare providers know about any treatment-related issues, and as you get older, your body and your needs will change.
Listen to your body and be kind to yourself.
When you think about your healthcare, think about all the pillars that together contribute to health and well-being:
- Learn about what you need to eat and what you need to avoid, to stay energised and healthy.
- Mental health
- Recognise that stress affects us all, so learning how to talk about and cope with the stresses of your HIV status in a healthy way is so important.
- Treatment may impact your body as well as your mind, so remember to respect your body and stay active in a way that works for you.
- Be open to ideas from beyond healthcare that can help you cope with your spiritual well-being, and ensure you have a support network that you can tap into.
You will need to confront stigma and sex as you get older, so be prepared, and be empowered.
Don’t fear intimate and sexual relationships. Knowing that you can manage your health like everyone else is a powerful tool, so stay informed and be positive. Ask your healthcare provider about how you can safely engage with sexual partners - knowledge is power. Know that Undetectable = Untransmissible (U=U) and that if you adhere to your treatment and maintain an undetectable viral load, you cannot transmit HIV to your sexual partner. The more you know about HIV, the better your health outcomes will become.
Be prepared for stigma and recognise that it will be more pronounced for some who know your status and less of an issue for others.. If you are the caregiver in your family, you will need extra support to manage your HIV, but even if you struggle to access HIV services, don’t stop searching until you find the support you need. If you can, think beyond yourself, there might be others out there in need of your help.
Finally, believe in yourself.
You will share your HIV story with people throughout your life, so turn your story into your superpower. Help others, and yourself by sharing your story, experiences and knowledge with your HIV community. Make sure to play an active role within your community, as friends and family may not always understand what you are going through, but there are many people living with HIV who can. Reach out to them and continue to develop a support network, that will help improve discussions with your healthcare providers and tackle challenges head-on.
Learn as much as you can about HIV, never stop asking questions and ensure that you, and not the virus, are always in the driving seat.
Respect yourself. Love yourself. Never give up hope. Rather than Human Immunodeficiency Virus, think of it as Hope Is Vital, because it is.
Hope is the key to your future.
Your future self
This article was developed by Marvelous Muchenje and ViiV Healthcare.