Challenges, Advocacy, and Support for Long-term Survivors

Living with HIV can be a journey of ups and downs, but for those who are long-term survivors, our challenges can be different. Many of us have been living with HIV for decades, and many have been working hard to break stereotypes through those years.

From my own experience, I have learned that advocacy and support for long-term survivors are particularly important so we can help to ensure our well-being and advocate for awareness and understanding in this society.

Getting older with HIV

One of the hardest challenges I have faced is just getting older while living with HIV. I know that is how I have been feeling since I turned 50 years old, and I know I must work through how I have been feeling, but at times it can be hard.

I ask myself if I will pass away from old age, HIV, or another comorbidity that comes with aging and HIV. Issues like heart disease, type 2 diabetes, high blood pressure, cancer, and kidney disease. Studies have shown that those aging with HIV (50 and over) and the link between non-communicable diseases have been risk factors for people living with HIV. That also includes smoking, alcohol, or using drugs. The HIV medication we take can also increase the risk for abdominal fat and high cholesterol.¹

That increase in belly fat has been a problem for me in the 26 years that I have been on my ARVs. Even when I do go to the gym, eat healthier, and start exercising, that fat in my belly does not seem to go away.

The battle continues

Despite the progress made in destigmatizing HIV, many still harbor misconceptions and judgments about those living with the virus. All advocacy efforts do play a significant role in dispelling these stereotypes and creating a more inclusive society. By sharing our stories and experiences, long-term survivors can educate others and challenge the misconceptions about HIV.

But having a network of support can help many of us who are long-term survivors because having a sense of belonging and understanding gives us the kind of comfort in knowing we are not alone. If you do not already have this network of peers, you may find being with others who have the same lived experiences can help more than you may know. I say this because I am finding myself isolating from others, and I know my struggles are not just my own.

The challenges faced

Though HIV is no longer life-threatening and very manageable, I have found it is the long-term effects of living with the virus that can take a toll on both physical and mental health, as well as the development of other health problems.

We know HIV can weaken the immune system and this can make long-term survivors susceptible to other illnesses. We need advocacy and support as long-term survivors. When others help as allies and advocate for our rights, we can and will be able to create a society of understanding that is especially inclusive to what long-term survivors need. This can include advocating for access to healthcare, social services just for long-term survivors, and mental health support to help create a journey of hope for all of us.

Another challenge we can face is the psychological impact of living with HIV for decades. Fear, anxiety, and depression are among long-term survivors, as some of us navigate the uncertainties of our health and face the stigma associated with the virus.

Celebrate long-term survivors

I know that I am considered a long-term survivor, but I know so many others who have fought since the very beginning. They are resilient, transparent, and have amazing strength. They have helped me to realize what it means to be stronger than you thought you could be.

Let's continue to amplify their voices and inspire others living with HIV – celebrating them every chance we get because they have dedicated their lives to raising awareness and have supported so many efforts in advocacy. They have paved the way for in our healthcare, in reducing the stigma, and increasing understanding.