It was by chance that I had been assigned to the CDC in the mid-90s. I wasn’t sure what to expect because we were never taught about HIV in school. I remember buying a book about it before I started – it’s still in my home – but really, most of the learning happens on the job itself.
In the past, there was a certain hush-hush when it came to HIV. People discussed the cases behind closed doors, so naturally I was curious. However, when I started coming face-to-face and conversing with the patients, I realised they are just like anyone of us.
Their suffering at the time was cruel. There were only two medicines. They were expensive, not very effective and came with a lot of side effects. I saw many patients dying at the time, so you could say I was doing quite a lot of palliative care work then.
Over the years, accessibility and quality of medical treatment have improved tremendously. Even then, HIV is an illness that affects you for the rest of your life. Unlike many other illnesses, it can’t be cured but is manageable. The physical suffering has been minimised now for a patient, however the psychological suffering can continue on for a long time due to societal stigma and discrimination.
When I started working at CDC, I went to the ward, speaking to
patients with HIV, regardless of whether they were referred to me or not. I wanted to understand their point of view, how they came to develop HIV, and how the illness is affecting them emotionally, physically and financially.
Sometimes, I would spend an entire afternoon just speaking with the patients. It was, and still is, heavy, listening to everyone’s struggles. But it became clear to me very early on that
patients with HIV needed to have someone to talk to. Sometimes, aside from us, no one else knew of their diagnosis.
This was why I insisted that doctors refer all newly diagnosed
patients with HIV to me even though I was the only Medical Social Worker at the CDC from 1995 to 1997. I requested CDC to implement a blanket referral system where all patients who are newly diagnosed with HIV are to be assigned a Medical Social Worker from the start of their diagnosis. The blanket referral system resulted in more work for sure, but this was work that had to be done. Today, that system continues.
Over the years, working with
patients with HIV has opened up my eyes to so many issues such as inequality and homelessness that often accompany the cases. I’ve also gained a much better understanding of people who have HIV. Where there might have been judgement before, there’s now empathy and respect for every individual who comes through our doors.
I became a Medical Social Worker to help others, but instead, I think I have been enriched because of how my worldview has expanded. While painful at times, I truly believe I have found the best job for me.
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