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My story is one of how a cascade of complications in life, self-deflection, and common medical issues can mask a serious underlying and life-threatening condition. It highlights the importance of regular testing and connecting symptoms that seem unrelated over time.
The impact of grief
Following my divorce in 2017, I experienced a period of low self-worth, self-care and self-esteem, which led me to make some careless decisions.
I tested negative on one test at the time and didn’t follow up with further tests. I wrongly assumed I hadn’t been infected and was careful, using protection after that period of carelessness. I dismissed minor health issues. A chest rash I blamed on summer heat, and recurring mouth ulcers I blamed on side effects from my steroid inhaler. Looking back, these were clearly early warning signs that something was going on in my body.
In June 2024, my mum was hospitalised with severe pneumonia, when she rapidly declined and sadly passed away on the 25th July. I was devastated – she and I were unbelievably close. She was my biggest cheerleader, a powerful advocate and ally for the queer community.
I was with her 24/7 in the hospital for almost a month, sleeping on the floor of her ward. When she passed, I was both physically and mentally exhausted, having already lost weight.
Her death sparked a period of depression and severe anxiety, where I was consumed with shock, anger and grief. My body began to break down in ways I initially attributed solely to the emotional trauma of losing the person who had been the one constant throughout my life.
My appetite disappeared, leading to further rapid weight loss, but I told myself this was a normal part of grieving.
Deteriorating health
By November 2024, after 2 bouts of COVID, I went off work on sick leave and developed persistent shortness of breath. Initially mild, it progressed to a constant feeling of not being able to get a full breath, which became severe doing even small activities – walking my dog became impossible.
I needed support from friends who became increasingly worried that there was something seriously wrong. Blood tests at this time revealed significant deficiencies in Vitamin D, B12, and Folate. It was a relief to have what I thought was a tangible explanation, believing this was the root cause of my fatigue and breathlessness. However, I continued to progressively become more ill.
By mid-December 2024, I was hardly eating, had constant nausea, and was extremely breathless. My body was ravaged with weight loss; I’d gone from a healthy 84kgs to 62kgs in a matter of months.
I went back to my doctor and begged for help, where she ran multiple blood tests, including an HIV screening. The HIV test was confirmed positive and whilst I knew I was very ill, I felt enormous relief that I finally had a diagnosis.
I referred myself to the incredible Bloomsbury Clinic at Mortimer Market Centre, specialists in HIV care. I had a second HIV test plus viral load and CD4 count blood tests.
On 31st December 2024, it was confirmed I had advanced HIV, with a severely compromised immune system and at risk of multiple opportunistic infections. I was prescribed both high-dose antibiotics to prevent pneumonia and 4 different antiretroviral drugs aiming to rapidly bring down my viral load and allow my CD4 count to start recovering.
However, at my follow-up appointment, my consultant noticed my breathing was severely laboured. My oxygen saturation levels had dropped dangerously low and I was rushed to hospital with suspected Pneumocystis jirovecii pneumonia (PCP). This is an opportunistic infection caused by a fungus that lies dormant in the body until CD4 cells are severely depleted.
In hospital I lost count of the amount of tests that were run. With chest x-rays, CT scans and so many blood tests, I felt like a clinical experiment. I was terrified. I was on high-flow oxygen and after 24 hours, PCP was finally confirmed. I was shown the x-rays and the medical team explained that it had affected 80% of my lung tissue.
I was also diagnosed with suspected IRIS (Immune Response Inflammatory Syndrome), which is a severe overreaction to antiretroviral HIV drug therapy, which added to my breathlessness. I was transferred from A&E to the infectious disease unit, which was a stark wake-up call that I had advanced HIV. However, I began to recover quickly and was thankful to get discharged after 4 days.
The road to recovery
Within 2 weeks, my viral load dropped dramatically to about 400 with my recovery guided by an incredible medical team. My CD4 count also started to improve.
Now, almost a year later, due to the miracle of modern HIV medicine and incredible care from the medical team at the Bloomsbury Clinic, I am undetectable with a healthier CD4 count.
I am still on the road to recovery, but I feel enormously grateful to have made it through such a horrendous period of severe ill health. This experience taught me a critical lesson about the timeline of illness, and I really want to stress that HIV is still a very real threat. We all need to be careful: use PrEP or practice safe sex, listen to our bodies for early warning signs of illness and have regular HIV tests.
Grief and stress can manifest physically, and common deficiencies can explain certain symptoms. However, when multiple physical and mental health issues converge, it is crucial to seek a comprehensive medical evaluation.
A sense of acceptance
I am thankful today to be in a much better place one year on from my health declining so severely. I recently felt ready to begin sharing my diagnosis and HIV status more openly. I reached out to the incredible team at the National AIDS Trust to offer to tell my story. They welcomed me into the charity with open arms and invited me to join them to cheer on runners at the Red Run in Victoria Park on November 22nd.
Surrounded for the first time by people supporting HIV charities, I experienced an incredible sense of acceptance. The day left me feeling uplifted and empowered, so much so that I came home and decided it was time to be more open; at that point, only a handful of close friends knew about my status and about my journey.
Inspired, I wrote a snapshot of my story and posted it on Instagram, nervous and unsure of how people would respond. I was completely overwhelmed by the flood of incredible, positive and supportive messages. Reading them was incredibly emotional; it filled me with immense pride for having taken that step.
I know personally that it takes time to come to terms with an HIV diagnosis, but taking the step to be more open and know I have support in many different places has been so worth it.
