“HIV is no longer a death sentence, but if left undiagnosed, it can be mistaken for one”, explains Sean, who was diagnosed in May 2024 following ill health which began in October 2023.

Symptoms

“I was severely fatigued and depressed. I had a throat infection and lost a quarter of my weight in 5 months. I was declining cognitively and was completely disorientated.

“Eventually, I experienced a seizure and was found to have low blood oxygen (hypoxia) and pneumocystis pneumonia which is a fungal infection of the lungs. I was losing blood through my bowels and when I was recovering at home developed a blood clot in my leg due to inactivity and susceptibility of my genetic makeup.”

Sean’s symptoms were related to living with undiagnosed HIV which had damaged his immune system; but at the time Sean had not connected his symptoms to the virus: “I hadn’t experienced some of the most common initial symptoms associated with HIV.”

Diagnosis

Sean was receiving treatment separately for the various conditions which were caused by HIV; and when he was in A&E following a seizure, he was offered a routine opt-out test for blood-borne viruses.

“I wasn’t shocked when I received my diagnosis. Lucy, the nurse from the clinic broke the news to me in a way that made it seem okay.

“The professionalism and lack of judgement set me up to believe that, I’ve got this, and I can come out the other side.

“I wasn’t stressed or anxious. I was in a numb mental state as my health had deteriorated rapidly, and I was in desperate need of answers.

“In a way, I was relieved it was HIV as I initially thought that I would likely lose my life, leaving my family and friends behind. I know HIV is treatable and people with the virus receive treatment and care which often means they go on to live long and healthy lives.”

Support system

Sean wasn’t worried about telling his friends and family, who have always been an important part of his support system.

“It’s all part of the grieving process. It’s an important step before acceptance and my friends and family provided emotional support.

“I’m a gay man and have always felt acceptance from family and friends. I’m not worried about the judgement or stigma historically associated with HIV either. A lot of work has been done in this area since the 80s and I’m not stigmatised.”

Treatment

Upon receiving a diagnosis, Sean was hospitalised for nearly a month and over 2 stays. His treatment team took regular blood tests to monitor the infection via an HIV viral load test which detects the levels of the virus in the blood; and a CD4 lymphocyte cell count measuring how the HIV has affected the immune system.

“As I had been diagnosed relatively late, my viral load was initially very high, in excess of 7 million, but once I had started to take the antiretroviral medication it came down, and now it’s reached undetectable levels.”

The antiretroviral medication had stopped the virus replicating in Sean’s body, enabling the immune system to repair itself and prevent further damage. Further tests assessed the damage caused by the virus.

“Both my lungs and heart had been damaged,” explained Sean, before interjecting: “Thankfully this isn’t permanent and I’m now on the road to recovery.

“I’ve had my vaccines to protect my immune system, and I receive regular tests as my body and immune system recovers. I was so thankful I made it to Christmas and, although I sometimes find it difficult to get around due to the congestion in my lungs, I finally feel I’m getting better.”

Community support

Sean is now receiving community-based support from a specialist team in Lewisham and Greenwich and is thankful for the holistic nature of this service.

“The community nurses were very helpful and treated me as an individual. They asked: ‘how are you and how can we support you?’

“My whole experience with the NHS has been great. In hospital, once my throat infection had cleared up, I could eat again. Then I was provided with a hot meal. This was the most poignant moment in my hospital stay.

“Ultimately, I’d be dead if it wasn’t for the NHS, and I am forever grateful to the staff that provided me with the immediate healthcare, the community-based support and the hot meal.

“I would recommend regular testing to all those who are sexually active, and to look after your body. We only get one and it can’t be returned to a store.”

More information

For more information about HIV testing and services, visit the Sexual Health Service section of the nhs.uk website.

Publication reference: PRN01849