Today, December 1st, marks World AIDS Day. Despite my nursing training, HIV and AIDS are not things I knew anything about until 2021, when I was exposed to HIV following a sexual assault. That event, fairly predictably, altered the course of my life, but I never expected that I would experience firsthand HIV stigma, and this arguably was the most challenging yet influential moment of this journey.
My experience
As I mentioned, I was the victim of sexual assault in September 2021. I reported it to the police and went through all the medical processes to ensure that I was protected against pregnancy and sexually transmitted infections, including HIV. For me, this involved me initially attending a sexual assault referral centre (SARC) where I underwent forensic medical examinations, and later attending my local sexual health clinic (who were wonderful throughout, and were a fantastic source of support at such an anxious and chaotic time in my life).
I was started on Post Exposure Prophylaxis (PEP, or PEPSE- post exposure prophylaxis following sexual exposure). For 28 days, I took tenofovir disoproxil/emtricitabine once daily and raltegravir twice daily. I religiously monitored any bodily sensations, terrified that this would indicate that HIV had been transmitted, particularly given that it had been over 72 hours between being exposed and starting medication which can reduce the effectiveness of PEP. It was horrendously overwhelming to try and determine what was a medication side effect and what could be a symptom of seroconversion.
At the point of starting PEP, I was tested for HIV which came up negative, but I was also informed that because of the proximity to the exposure, this test would likely be negative even if I had seroconverted- it can take up to 3 months for HIV antibodies to be detected. Because I was so anxious, I ended up asking for another test the week after, which was also negative.
3 weeks into taking PEP, I was admitted to hospital for diabetic ketoacidosis. Not uncommon for me, so I didn't think too much of it. Until I heard an A&E nurse doing a handover to the ward. It was quite clearly about me, and I overheard him say 'HIV positive' as part of my past medical history. I wasn't able to ask anyone about it, as I was then moved up to the ward, and felt so unwell that it partially slipped my mind.
I was put into a side room, and left to rest. The next time the nurse came in to do a set of observations and change my medication, I noticed they were in full PPE- gown, gloves, mask, goggles- and that there was a 'contact precautions' sign on the door. Again, I didn't think too much of it, as this wasn't long after a wave of covid. Maybe they'd accidentally left the sign on the door after the last patient?
I only started to connect the dots when I was asked to limit my use of the shared bathroom (if you've ever been in DKA and receiving fluid resuscitation, you'll know how often you have to pee, so this was incredibly difficult in itself), and when people stopped coming into the room to ask me things. My dinner order was taken from the doorway, and when my food was delivered, the tray was left on top of the bin by the door. I was connected to multiple IVs and infusion pumps, so I wasn't able to get out of the bed to get the food. This happened repeatedly over the course of this admission. At the time, the worst part for me was that I didn't get offered a single cup of tea for the entire time I was on the ward. All I wanted was some tea to help me feel better, and at the time, this was what made me saddest.
When staff did have to come into the room to provide care, the full PPE continued. After 3 days, I was discharged home, and had a follow up in the sexual health clinic to mark the end of my month on PEP and to have another HIV test, which remained negative. I mentioned my experience in hospital to the doctor in the clinic, and that I was worried that either I had been misdiagnosed with HIV, or that I was actually HIV positive and that it was being kept from me. She looked into it, and found that my notes stated clearly that I was HIV positive. However, she reassured me that there was no evidence that HIV had been transmitted, given that I had taken the medication as prescribed and had 3 negative HIV tests. I would still need another test in 2 months to fully confirm, but as far as she was concerned, I was not HIV positive. She told me that she would look into it.
Around a week later, I recieved a call informing me that despite 2 negative HIV tests on my patient record, and despite taking the medication as PEP, rather than as treatment for HIV, a doctor in A&E saw the medication, and made inferences based on that without asking me anything. I had been documented as having HIV. I later found out that a flag had been added to my medical record, meaning that a warning box popped up any time someone clicked into my notes, letting them know that I was HIV positive. I received an apology from the doctor in A&E who had made the assumption and added the comments to my notes, and the 'diagnosis' was removed. 2 months later, I had a final negative HIV test and this chapter of my life concluded. I will caveat this by saying that I have ongoing trauma from this experience, which comes in the form of extreme paranoia about being HIV positive and leads to me seeking reassurance by getting regular HIV tests. At this point, 3 years later, I complete an HIV home testing kit every 3-4 months, even if I've had no reason to believe that I have HIV.
The experience in hospital felt like a terrible nightmare, and I realised that I had not only been the victim of medical mismanagement, but also rampant HIV stigma. I don't believe that the prejudice was meant with any malice, but instead was borne from ignorance. Staff in the hospital had no discernible knowledge about HIV to know how to treat someone who did actually have HIV. And it made me realise that I, as a nurse, also had no discernible knowledge about HIV and would probably have no idea how to manage a patient that was HIV positive. The reality is, someone in hospital wouldn't need any kind of special or different treatment beyond people taking regular infection control measures, like avoiding getting bodily fluids in their eyes or mouth (I very much hope that healthcare professionals strive for this on a daily basis). Particularly if someone was on treatment and had an undetectable viral load- one of the most important messages in HIV care is that U=U, or undetectable = untransmissible. There is absolutely no need for someone to be isolated in a side room, for staff to wear a gown and gloves for basic care, or even entering the room, for limiting others' exposure to urine in a shared bathroom. Even invasive procedures, such as taking blood, wouldn't require anything other than standard procedures like wearing gloves and avoiding needlestick injuries. Again, one hopes that all staff are trying to avoid needlestick injuries with every patient they interact with.
What next?
Part of what left me feeling so dreadful after this experience was recognising that I had experienced this level of stigma whilst also having a massive amount of privilege, that usually would have protected me. I'm white, female, well educated, straight passing- I don't fit into many of the categories of people who are incorrectly perceived to be more lkely to be HIV positive, and who are very sadly more likely to experience HIV stigma as a result. My thought process was that if I, with all this privilege, had this experience, what were people not afforded the same privilege experiencing?
That's why when I saw an opportunity to join Youth StopAIDS as a campaign leader, I jumped at the opportunity to immerse myself in advocacy and in trying to make a positive change. I started campaigning with YSA (a group partly organised by StopAIDS) in September 2023, and had the most incredible experiences over the next year. We attended a World AIDS Day conference, got into local media, and organised a nationwide Speaker Tour to platform the voices of young people from across the globe living with HIV. We visited 5 cities and held events in Parliament and in the Foreign and Commonwealth Development Office. All of our speakers had experienced some form or direct or indirect stigma or discrimination since being diagnosed, and it was sobering and maddening to hear their experiences.
One of our speakers is a registered nurse in Ireland and she shared my horrible realisation that HIV is massively excluded from nursing education, and that something needs to change. I don't know how we make that change happen, but a good start for student healthcare professionals is to at least do your own research into it. Read about how HIV is transmitted and treated, consider your own beliefs and prejudices, and reflect on what you don't know about HIV so that you can strive to do better. Know your own HIV status (we all have a status!), take regular tests, and understand that literally anyone can be HIV positive. Start conversations with peers, clinicians, university tutors. Speak to people living with HIV to understand their lived experiences, and consider how you can best advocate for people living with HIV. Wear a red ribbon on December 1st, and every day, to show that you support the fight against HIV and AIDS.
Here are some resources that can provide you with more information:
AIDS Map (nb, AIDS Map ceased operating in August 2024 and will no longer be available from September 2025, but provides some fantastic information)
Like I said at the start, this experience altered the course of my life. The overwhelming negative of experiencing stigma, and being able to channel that into something wonderful through activism.
I hope that this post gives you pause for thought, and helps you to consider your own practice and personal beliefs when it comes to HIV. You can help to be the reason that someone else doesn't have the same experience as I did.
With love,
Christie x
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