We need to talk about STIs and mental health
Honey Wyatt unpacks how STI diagnoses can impact mental health, and how to deal with it. She learns the real-life effect of STI shame and stigma on the people who have one, and hears from SH:24 nurse Helen Burkitt for tips on how to support your mental health after a diagnosis.
TW: mention of suicidal thoughts and depression
Credit: Sydney Sims, Unsplash
Three years ago, a sore appeared on my vulva. As a hypochondriac, I can easily convince myself that a slight tummy ache is a sign of something unwarrantedly severe. But fresh from a breakup, having gone days without talking to anyone in the midst of a pandemic, this new ailment pushed me dangerously close to the edge.
It started with a slight tinge, but as the days progressed, the more the sore grew in size and pain. I took to examining my vulva in a hand mirror I kept in my room at least once an hour to make sure it hadn’t engulfed my entire underside, and maniacally making calls to my mum and friends claiming I thought I had herpes.
Eventually, cajoled out of my hibernation, I dragged myself to the student GP, who swabbed the sore in what can only be described as the most excruciating 15 seconds of my life, and pronounced that I “probably” had herpes. To my dismay, I’d have to wait 10 working days to find out for sure.
“Me and my colleagues have given HIV reactive results to service users over the phone who become extremely distressed, and say things like ‘I am going to kill myself’”
By the time I received the dreaded confirmation, I’d convinced myself that a herpes diagnosis would be the end of my sex life. No one else I knew of had herpes; I felt like I had no one who understood what I was going through, and it didn’t help that the only information the doctors gave me was to tell my partners and to use condoms when I had sex.
The unknown of it all threw my mental health completely out of whack. I scoured the internet for any scraps of information I could find about dealing with herpes, which led me down the rabbit hole of the r/genitalherpes and r/HSVpositive threads. Like me, people with a recent diagnosis sought the advice or sympathetic ears of the communities’ collective 15.3k members.
Some of it was positive, some of it not so, with members expressing feelings of hopelessness, loneliness, and shame around their diagnosis. Helen Burkitt, senior sexual health nurse at NHS sexual health services SH:24 and Fettle, explains that: “There is still a huge amount of fear, stigma, and shame around STIs and testing”.
This often translates into people feeling anxiety around testing – whether that’s accessing testing, doing the test itself, or getting a potential positive result. “A lot of people will order a test with our service and then take a long time getting around to actually doing the test and posting it back,” Burkitt explains.
Waiting for the result is just as bad. “We get a lot of anxious service users who contact us during this [waiting] time period,” she says.
How STI stigma can impact mental health
Due to the stigma around STIs, it’s not uncommon for people’s mental health to suffer following a positive STI diagnosis, particularly for people with HIV, genital warts (HPV), or herpes (HSV1 or HSV2).
“Me and my colleagues have given HIV reactive results to service users over the phone who have become extremely distressed during the call, and will say things like ‘I am going to kill myself because of this’” Burkitt recalls. “We have to help calm them down and talk them through the result and next steps.”
People can feel similarly distressed when they find out they have herpes: “When I have given a herpes diagnosis in a sexual health clinic, you get people in tears, inconsolable, and who need a lot of counselling and reassurance,” she says. “They are really really upset and distraught with the diagnosis.”
“Having pain, irritation, and the appearance of genital redness is overwhelmingly devastating”
Calum*, 30, felt “extremely overwhelmed” when he found out he had herpes one month ago. Describing how direct and “without empathy” the doctor was when he was diagnosed, “I will never have sex anymore,” he remembers thinking.
“I stopped eating, I had insomnia problems, I was depressed and anxious at the same time, thinking about a dark future, as if all the worst situations on the internet were going to happen to me. It really triggers my mental health, and having pain, irritation, and the appearance of genital redness is overwhelmingly devastating.”
Experiencing new symptoms is stressful in any situation, but the specific lack of knowledge around STIs contributes to people feeling distressed when they’re diagnosed with one. “People don’t really know what STIs are and what getting one can mean,” says Burkitt.
Due to the insufficient knowledge around STIs, “people have a fear of having an infection, and uncertainty about what it means for their short and long term health”. When it comes to sharing their STI status, people can be anxious about telling partners they have an infection or stressed about the possibility of having passed it on to them, or asking them to be tested.
“Some people think they can only date or have sex with other people with herpes, or will have to disclose they have herpes to every single person they ever meet,” explains Burkitt.
“When I found out I couldn’t stop crying, I felt so alone like I couldn’t tell anyone, like no one would ever love me or want to be with me”
When Aline*, 29, was diagnosed with herpes in June of this year, she was “completely blindsided”. Having been proactive with her sexual health – getting regularly tested, having partners get tested, and using protection – she thought she was doing everything right. “I had no clue that HSV wasn’t regularly included in STI panels. I have no idea condoms weren’t 100% preventative,” says Aline.
“It devastated me when I got the diagnosis. When I found out I couldn’t stop crying, I felt so alone like I couldn’t tell anyone, like no one would ever love me or want to be with me. That people would be afraid to touch me. I had never been suicidal until this summer.
“Thankfully, I’m in a better headspace but I am still very much depressed. Every morning I wake up hoping this isn’t my reality. While I’ve come to accept that it is, I very much wish this wasn’t the case.”
How to manage your mental health after an STI diagnosis
STIs aren’t going anywhere – more than a million people worldwide acquire one every day – so it’s important to learn how to support yourself through a potentially stressful period. “The best way for someone to support themselves after a diagnosis is to try to understand as much as they can about the STI,” Burkitt advises.
Dedicate time to learning its symptoms, as well as how it’s transmitted and treated. “The more understanding and information they have around something, the less scary it can be,” she says. Once I had absorbed as much information about herpes as I possibly could, it helped me put my diagnosis in perspective.
While it was easy to feel like I was the only one going through it, I learned how common STIs really are. Most STIs are curable, if not treatable, and they are extremely common. More than 500 million people between the ages of 15 and 49 are estimated to have a genital infection of herpes worldwide, while 39 million people were living with HIV in 2022.
“If you’re sexually active, most people will have one (or more) in their lifetime,” explains Burkitt. It’s important to “remember there is nothing wrong with having an STI, it is not dirty or shameful, and nobody should be made to feel guilty if they have one”.
Though it’s certainly true nobody should make you feel bad about your STI status (nobody asks to have one!), my main source of guilt came from being distressed about it (you can see how this is a catch 22 type beat).
I had a sex podcast; I thought of myself as sex positive. If anyone around me told me they had an STI I’d tell them it wasn’t a big deal before they could even finish their sentence. But for some reason because I was going through it I was surprised by how ashamed I felt.
“There is nothing wrong with having an STI, it is not dirty or shameful, and nobody should be made to feel guilty if they have one”
During this time, I found it was helpful to be extra sympathetic towards myself, and to focus on my health. Burkitt suggests: “Keep yourself healthy, get treated, take your treatment properly, go for any follow up appointments you might need.
“Practise safe sex, carry on testing and advocating for your sexual health, remember the quicker a STI is picked up, the easier it is to treat and manage.”
It’s also important to speak to people you know will be sympathetic. “Honestly, telling my friends and family was one of the most freeing things I could have done for myself,” Aline reflects. "I finally didn’t have to keep it all in, and nothing changed between me and them. It showed me how accepting people can be of herpes.”
If you can’t speak to friends or family about it, speak to a professional, Burkitt advises. There is always someone to speak to, and while it can feel like a burden you will have to endure for life, it really does get better.
“I refuse to just let herpes happen to me,” says Aline. “I also turned to advocating for change, educating and spreading awareness. I've decided that while I can't change this reality, I can change what I do.
“I want to use this for good. To create change. To advocate for a better future for all of us. Advocacy genuinely helps me get out of bed each day. Having a purpose has helped immensely.”
If you are struggling with anything mentioned in this article, help is available at the services below:
Your local NHS sexual health clinic should have health advisors and psychosexual therapists, alongside specially trained doctors and nurses. Find your local clinic here
Health advising team at NHS sexual health clinics: most if not all sexual health services have a health advisor team who can offer advice and support around testing, STI diagnoses and partner notification
Sexwise website
National Sexual Health Helpline provided by The Department of Health and Social Care on 0300 123 7123
Talk to your GP about future support or call NHS 111
Help for health anxiety: Anxiety UK and NHS
HIV support: Terrence Higgins Trust Herpes Association for herpes support: https://herpes.org.uk/
Hepatitis support: British Liver Trust
*names have been changed