MOVING FORWARD ON YOUR HIV JOURNEY

There’s no right or wrong way to respond to an HIV diagnosis.

Everyone processes it in their own way. It can spark a whole range of emotions: shock, fear, anger, sadness, shame and everything in between, but it’s important that you don’t feel like you’re alone.

There are lots of people out there who understand how you may be feeling. There are also a lot of resources available to support you now and throughout your HIV journey. As you find more information and make connections that work for you, things should begin to make more sense.

So, take your time but remember, you don’t need to know everything straight away. Living with HIV is a journey and with the support of experts, peers, advocates, community members and more, you can learn a lot along the way.

Here are some tips to getting started on your HIV journey from people who have been there themselves, including those who received their HIV diagnosis later in life.

DEALING WITH YOUR DIAGNOSIS

Everybody deals with their HIV diagnosis differently and there’s no such thing as the right way to do it. However, there are some things that can help you get through this initial stage of your HIV journey.

Here are some top tips on dealing with your diagnosis from people living with HIV.

1. Don’t panic

So, you’ve just been told you’re HIV positive and there’s a lot going on. It’s normal to be scared or worried but take a breath and slow down, everything is going to be ok – people living with HIV today can expect to live a long and healthy life, just like the rest of the population.¹

It is scientific fact that when a person living with HIV is on effective medication and has achieved an undetectable viral load, they cannot pass on HIV to their sexual partners.^2,3That means you can continue to have sex without fear of passing it on, start a family, and pursue all the dreams you had before you received your HIV diagnosis.

Find about more about U=U (Undetectable=Untransmittable).
2. Ask questions

Remember, there’s no such thing as a stupid question on your HIV journey

If a question pops into your head, write it down somewhere safe. That way when you’re at home you can look it up on a reputable website or ask your healthcare team next time you have an appointment.
3. You don’t need to go through it alone
When you’ve just been given your HIV diagnosis, it can be very tempting to keep it all to yourself. You might feel like this is something you need to deal with alone or you don’t want anyone else to know – that’s understandable, but having someone to discuss your situation with can lighten your load and help you feel empowered and more in control of your diagnosis.

Here are some things you can try:

Sit down with a trusted friend or family member and share as much as you feel comfortable

Get in touch with an HIV support organisation. For example, Positively UK can set you up with a positive peer mentor

Looped In, created and run by NAT (National AIDS Trust), allows users to create custom webpages that can be shared with others to support conversations about HIV

Take your time and choose what feels right and safe for you, and remember, the benefits of sharing can be life-changing.

Sharing HIV diagnosis stories

Hearing about how other people got through this stage of their HIV journey can help you feel less alone and more positive moving forward. These stories are from people who are now proudly living happy and healthy lives with HIV.

How Robert moved from denial to strength

An HIV diagnosis may come as a shock, or it may have been something that you suspected for a while. Hear how Robert was diagnosed as living with HIV in his early thirties, following the break-up of a long-term relationship.

HIV diagnosis: Finding your best strategy

Receiving the news that you’re living with HIV can be difficult to process. It's normal to feel negatively about your diagnosis but try to counter it by reminding yourself that HIV isn’t what it used to be.

Today, there are many treatment options, resources and support systems available that can help you live long, healthy, and happy lives with HIV.⁴

Developing a positive strategy for managing your HIV can really help. Here are a few tips from people within the HIV community:

1. Educate yourself

After your HIV diagnosis, find reliable HIV resources and bookmark them so that you can get good answers whenever questions pop up.
2. Identify your ‘home’ clinic

This should be somewhere you feel comfortable and can build a strong, trusting relationship with your healthcare team. It doesn’t always have to be the clinic closest to where you live – remember, you are free to choose the option that works best for you.
3. Have a ‘go-to’ person

This is someone that you can share your concerns with face-to-face and who can answer your questions. It could be a healthcare professional, an HIV peer mentor or someone from the wider community. The most important thing is that it’s someone you trust who is well informed about HIV.
4. Stay informed and in control

HIV can be managed alongside any other health and wellness issues you may have. Treat your HIV journey with the same importance you would give to your diet, fitness, and mental health.

UNDETECTABLE = UNTRANSMITTABLE (U=U)

The first goal of HIV treatment is to make your viral load undetectable, meaning your viral load is so low that it can’t be detected by the tests used to measure it.⁴

When you have an undetectable viral load, the virus becomes "untransmittable”. This means, with effective treatment, you can’t pass HIV on to your sexual partners.⁴

U=U is an empowering message that helps a lot of people feel more confident about their condition.

A breakthrough for people living with HIV

If you are living with HIV and maintain undetectable levels of the virus, there is great news. HIV can’t be passed on to your sexual partners.³

In 2019, the findings of the PARTNER study proved that when a person living with HIV is on effective medication with an undetectable viral load, they cannot pass on HIV to their sexual partners.^2,3,5

Data from the Positive Perspectives study highlighted the importance of this happy fact. For example, people living with HIV who are told about U=U by their healthcare providers are more likely to be satisfied with their treatment, take their medication as prescribed and have better health and wellbeing.⁶

Hear Bruce talk about the importance of sharing the message of U=U.

The science behind U=U

Scientific studies show that people living with HIV can live healthy, full lives, without fear of passing on HIV.³

The landmark PARTNER study looked at over 112,000 instances of sex without a condom, where one partner was HIV positive, and one was HIV negative. When the HIV positive partner was on an effective treatment – reducing their viral load to ‘undetectable’ levels – there were zero cases of HIV transmission.^2,3,5

Key findings from Positive Perspectives

To help support people living with HIV to live long, happy, healthy lives, it’s important to understand the challenges people face post HIV diagnosis , and how they impact their quality of life.

Positive Perspectives is a global study that shines light on the experiences and aspirations of 2,389 people living with HIV aged 18-84 from 25 countries. It investigates how people living with HIV rate their health, how HIV impacts their lives and how it affects their outlook for the future.⁶

Starting new conversations

Just over one-third of people who took part in the study said they were not told about U=U by their healthcare team. Men who have sex with women are the least likely group to report having been given this information:^6,7

The impact of U=U

There are physical, mental and social benefits to talking to your doctor about U=U. People living with HIV who said they were told about U=U by their healthcare team, had better health than those who hadn’t.⁷ They were also more satisfied with their treatment and a higher percentage reported virologic control:⁷

Helping you to stay on track

U=U can help you with adherence too. Knowing that an undetectable viral load can be reached helps and motivates many people living with HIV to stick to their treatment plan:⁷

BECOMING UNDETECTABLE

Becoming undetectable is an empowering experience for many people living with HIV that helps them feel more in control of their condition and life. Hearing what U=U meant for others can help inspire you on your own HIV journey

Tom’s story

When Tom learnt he was undetectable it boosted his self-esteem and confidence, bringing a positive change to his relationship with his partner. Hear his story about how U=U changed how he saw his HIV and himself.

Robert’s story

Hear Robert talk openly about his poor health and low self-esteem whilst living with untreated HIV and learn how becoming undetectable has made him feel more confident in life and love.

Angelina’s story

Angelina shares how, once her HIV became undetectable, she felt more comfortable talking about her diagnosis. She also gives some insight into what being undetectable can mean for those looking to start a family.

WHAT'S NEXT?

References:

Life expectancy for people with HIV. Available at: https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv [Accessed September 2021].
Rodger AJ, et al. JAMA. 2016;316:171–181.
NAM AIDSMAP. What does undetectable = untransmittable (U=U) mean?. Available at: https://www.aidsmap.com/about-hiv/what-does-undetectable-untransmittable-uu-mean [Accessed September 2021].
National Health Service. Treatment – HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/treatment/ [Accessed: September 2021].
Rodger AJ, et al. Lancet. 2019;393:2428–2438.
Global Positive Perspectives Study, Wave 2: Understanding the Unmet Needs of People Living with HIV. Available at: https://viivhealthcare.com/en-gb/our-stories/partnerships-key-populations/global-positive-perspectives-study-2-people-living-with-HIV/. [Accessed September 2021].
Okoli C, et al. Poster presented at the 23rd International AIDS Conference; 2020; July 6–10. Poster PED 0773.

MOVING FORWARD ON YOUR HIV JOURNEY

There’s no right or wrong way to respond to an HIV diagnosis.

DEALING WITH YOUR DIAGNOSIS

1. Don’t panic

2. Ask questions

3. You don’t need to go through it alone

Sharing HIV diagnosis stories

How Robert moved from denial to strength

HIV diagnosis: Finding your best strategy

1. Educate yourself

2. Identify your ‘home’ clinic

3. Have a ‘go-to’ person

4. Stay informed and in control