Surviving the Pandemic as a Person Living With HIV

Like many people living through the past year, I found that COVID-19 affected pretty much every aspect of my life: my healthcare, my work life, and my home life. For someone who has lived a very stable life, it’s been a lot to handle. I came to the United States with my family at the age 6 of years, and I’ve lived in the same neighborhood ever since. It’s why I enjoy my morning walks. I know everyone and everyone knows me. I also worked in the same hair salon from 1974 until the shutdown in March 2020. I had many clients I saw regularly for years.

My biggest challenge before COVID-19 was the AIDS epidemic, when I lost my partner and all of my closest friends. I was diagnosed with HIV in 1989, and I’ve been seeing the same specialist since 1990. I’ve been taking antiretroviral medication ever since then. At one point, my T-cells were down to 20, but they came back after my doctor changed my medication. He’s great, so I’ve stayed with him. I was always open with my clients about my diagnosis, and nearly all of them continued to see me. But there was a lot of discrimination back then. It’s much better today, but occasionally, someone shuns me.

My healthcare is complicated. In addition to HIV, I have bipolar disorder. It’s mostly under control, but I have some mania and depression sometimes. I can get through it. I also developed osteoporosis, which was probably related to one of my antiretroviral medications. Then I developed polyps in my throat, which was probably related to a medication I took for osteoporosis. I’ve learned to choose my doctors carefully. They have to work as a team and be precise and thorough so we can avoid drug interactions. During the pandemic, I was able to use telemedicine for doctor visits, and it worked when I was dealing with doctors I know well. But in the summer of 2020, I needed back surgery. I found that I needed to meet my new doctors and the surgeon in person to decide if they were right for me—a video meeting was not good enough. It wasn’t easy having surgery during a pandemic, but the staff at Mass General were very careful, and my partner was even allowed to visit me. The physical therapist helped me practice walking up steps, which is important since my apartment is on the third floor.

COVID-19 also affected my work. I was waiting for the salon I’d worked in for so many years to reopen, but in September, it went out of business. I’m 69 years old, so I could retire, but I’ll probably look for part-time work when everyone is vaccinated. I also missed my annual summer trip to Italy. My partner has also been working from home, so I don’t have the alone time in the apartment I was used to. It’s not easy.

So, it’s been a tough year, but with my partner of 21 years and friends and my healthcare team, I got through it. I can’t wait for everything to open up again.

Your Thoughts
If you are an HIV healthcare professional, what have your patients shared with you about their experience living through the past year of the COVID-19 pandemic? If you are someone living with HIV, what has it been like for you? Join the discussion by posting a comment sharing your experiences.