For #SHW24 we’re exploring the links between mental health and sexual health. In this blog, Ellie Harrison, a Positive Voices speaker for Terrence Higgins Trust, shares her tips for managing your mental health following a positive HIV diagnosis.
When I was diagnosed with HIV in 2018 it was a distressing time.
I knew nothing about HIV – my only knowledge of it was when Ste was diagnosed in Hollyoaks. The one thing that kept me going was the thought that Ste got HIV ages ago and was still in the show. Maybe I’d be OK too?
I’d assumed my treatment plan would be massive but that wasn’t the case. The nurse told me I just needed to take one pill a day, which reduces the level of HIV in my body to an undetectable level, meaning it’s impossible to pass the virus on to anyone else.
I live a completely normal life – the only change is that one pill. Thanks to incredible progress around HIV, people like me can live fulfilling lives which are just as long (if not longer!) than those who are HIV negative. But a HIV diagnosis can take a huge toll on your mental health because of the stigma associated with it.
In fact, today, the stigma around HIV does more damage than the virus itself.
Here are my top tips for managing your mental health following an HIV diagnosis.
1. Learn the facts on HIV
If you’ve just been diagnosed with HIV you might be feeling upset, shocked or angry. You might be having trouble taking in the things you’ve been told – but it’s so important to know that you can now life a long, healthy life with HIV. That includes having children free from HIV.
HIV in no way limits my life, but it can have a devastating psychological impact. You can call Terrence Higgins Trust’s helpline, THT Direct on 0808 802 1221 for immediate support. When I told my mum I was living with HIV, she was on the phone with them for three hours and got all the information she needed, including how to support me and the correct things to say to me.
2. Give yourself time and space to process the news
When I was diagnosed with HIV I did not allow myself time to process and heal properly. I put too much pressure on myself to tell people – looking back I realise that there actually was no rush. I tried to make myself feel better by going on nights out and getting drunk, telling friends when actually I wasn’t ready. Thankfully they didn’t react badly, but they didn’t know what to say either. None of us had ever thought HIV would hit our friendship group – a lot of them cried. Negative reactions can really hurt, especially when you haven’t come to terms with your HIV diagnosis. You should never feel rushed into sharing your HIV status – take as much time as you need.
3. Talk to other people living with HIV
Finding support from other people living with HIV can be life-changing. Speaking to others who are in the same boat about their experiences and what worked for them really helped – it made me realise there was light at the end of the tunnel and that self-acceptance was possible. Later this year, Terrence Higgins Trust are launching My Community, a free online space for anyone living with HIV in the UK to feel supported, connect, share experiences, seek advice, find reliable information and get involved.
4. Speak to a loved one you trust when you feel ready
Confiding in someone close can be an invaluable source of support although it’s important to know that many people believe incorrect information about HIV and could treat you differently because of it. It might be a good idea to have some information with you when clearing up those misconceptions as not everyone will know what you know. There is no rush to tell others if you don’t feel ready and some people may not feel safe talking about their HIV diagnosis.
The biggest advice I can give to allies is to be kind and considerate. Unless you’re someone living with HIV, you can’t imagine just how petrifying it is to be open about your status. By normalising conversations about HIV and spreading the word about the progress we’ve made, we can create a safe space for people to talk openly about what it’s like to live with HIV.
5. Take manageable steps to manage your mental health
Depression is twice as common among people living with HIV – one in three will have some symptoms of it at some point in their lives. Struggling with anxiety, self-image and insomnia is also common.
I try as much as possible to separate my HIV diagnosis from my mental health. I used to put them in the same category but this felt like too much to deal with at once. Taking manageable steps to manage your mental health can really help – that includes seeing friends and family members who make you feel loved and cared for, keeping up with social activities even if you don’t feel like it and joining support groups. Being with others who are also dealing with it can go a long way.
As we mark Sexual Health Week, it’s important to acknowledge the connection between mental and sexual health, especially for those living with HIV. Breaking the stigma surrounding HIV and ensuring that services support mental wellbeing as well as physical health, mean we can support people living with HIV to live long and healthy lives.
