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Have you been HIV+ for several years? Has your waistline become increasingly larger over time, even while following a healthy diet and exercising? If the answer to both these questions is YES, you should read on. Seven years ago, I noticed that I was storing fat around my stomach and waistline. Suddenly I was flabbier. I was developing love handles. I was 40 at the time. At first, I thought that this could be a consequence of my metabolism slowing down. However, my lifestyle wouldn’t explain the body changes that I was experiencing. As a keen cyclist, gym goer and regular squash player, I’ve always embraced a very active lifestyle and followed a healthy diet.

A normal life

What was happening to my body didn’t make sense. Then, I realised that I was looking at this from the wrong angle. The fact is, I wasn’t gaining any weight. Instead, it was the fat distribution in my body that was off. Therefore, I’ve started looking for outside factors that potentially could cause my visceral fat gain, and I began to discuss my concern with other people I knew to be HIV+. Once we shared our experiences, it became clear that there was a familiar pattern. I still remember what my HIV doctor told me at my diagnosis fifteen years ago. “I am not giving you a death sentence. Taking your meds will allow you to grow old and live a normal life. No, you won’t develop any lipoatrophy, heritage of the old treatment regimens.” It’s all true, and I was relieved. But unfortunately, this was only half the story, as I discovered when I came across a medical study published in February 2019.

As it turned out, the HIV infection itself initiates the first wave of irreversible alterations and inflammation in adipose tissue (which serves as the reservoir for HIV). These modifications eventually will affect the natural distribution of fat in the body. The study states, among other things, that to monitor changes, and where a body scan is not available, HIV+ patients in a stable condition should have their waist measured every time they have their six-month routine checks. Yet, in fifteen years, I’ve never had my waist measured. It is only a matter of time before an individual infected with HIV will develop lipo-hypertrophy, intra-abdominal visceral fat accumulation in breasts, the dorsal-cervical region, and under the skin as lipomas. As a result, you will look overweight, even if you’re not. Combining high-intensity aerobic exercises and strength training is the only possible way to shift or control visceral fat increase. These days, my cardio classes and I are best friends.

An ageing HIV+ population

I wonder why HIV doctors don’t discuss this matter with their patients. Possibly, it could be because HIV is a relatively new virus. There is not enough data to understand what it does to an ageing person. However, the proper conversation would provide people with the knowledge to make an informed choice on how to keep visceral fat gain under control if they wish to do so. I believe that we have an HIV+ ageing population who’s unaware that their expanding waistline directly results from being infected with HIV and think that developing a belly is a natural consequence of growing old and being less active. Gay men, in general, have body-image issues, more so HIV+ people, who subconsciously strive to look healthy. A growing belly is not what most of us want. I wonder how the inability to keep a waistline in check would eventually affect one’s mental health. Evidence shows that high visceral fat accumulation causes cholesterol. Cholesterol, if untreated, leads to diabetes.

There is no data I am aware of to learn how many long-term HIV+ people in their twenties, thirties, forties, and over (in the UK or across the world) already have high cholesterol or diabetes. We don’t know how this might impact HIV medical funding in years to come. Most importantly, no one is having this conversation. The focus is on PrEP and reducing HIV infections in the UK to zero within a decade. The focus is not on the HIV+ community. As it grows older, the HIV+ population faces many problems no one could foresee or anticipate. We are learning as we keep on living into old age. It’s paramount that we listen to our bodies and note what we see and how we feel. It is our responsibility to ask the questions.

Keep fighting

If we don’t speak up, no one will. We must keep fighting for ourselves and honour the millions of people who died. Without them, we wouldn’t be here either. Therefore, if this article reflects your experience, talk about it with your peers and share. There is no shame in being HIV+. In the end, we are all patient zero, still seeking hope, answers, and a better life. 

About the author

Mario Forgione

Mario Forgione is a part-time cabin crew, a carer and a blogger. When he doesn’t pretend to work as an excuse to explore the world, Mario campaigns for causes close to his heart. His work has appeared in publications including Attitude, DNA, FS, GMFA and Out in the City.

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