When I think about what HIV means to me, I think, “HIV means a new way of life.” Every day, I must take medication to stay as healthy as possible. I never thought much about my health before being diagnosed, but HIV changed that.

HIV used to mean knowing CD4 numbers and status. Today, it means knowing if I still have an undetectable viral load or if I’ve become detectable again.

I didn’t know much about HIV before I was diagnosed. I didn’t know when I was first diagnosed with HIV that things would be alright. I wish I knew then that having an undetectable viral load meant I wasn’t going to pass HIV to others. Today, I am more educated on HIV than I was then.

“I wish I knew then that having an undetectable viral load meant I wasn’t going to pass HIV to others.”

— A myHIVteam member

The Ups and Downs of Living With HIV

Living with HIV is a roller coaster ride. Some days, I feel like I am at the top of the roller coaster enjoying the view from the heights without a care in the world. Then I go on that steep plunge and try to keep myself from panicking. Then I’m at the low point of that coaster, and the ride ends.

The low point and end of the ride is the depression setting in. What I wouldn’t do to get back to the top of that rollercoaster again! I go through these feelings for days, weeks, or months on end.

How HIV Affects My Daily Life

Up until this year, HIV hasn’t impacted my main obligation, my job. I’ve missed a lot of work because of doctor appointments. Sometimes, my feet bother me at work, so I have to take some extra breaks.

I’ve also dealt with recurring methicillin-resistant Staphylococcus aureus (MRSA) infections, which can be more common in people living with HIV. When an infection comes back, I sometimes can’t go to work. Then everyone else has to work harder to cover my position.

What I Wish Friends and Family Understood

I recently asked my family and friends what HIV means to them. They didn’t have much to say because they don’t know much about HIV. I asked them what they would like to know about HIV. They wanted to know what we deal with on a daily basis. They also wanted to know what we went through physically and mentally when we found out we have HIV.

It’s easy to explain what we go through to friends and family, but it’s hard when they don’t understand when you’re actually going through it. It’s like everything you taught them went out the window.

I wish they would understand the pain, numbness, depression, and the need to talk to someone who understands. I wish they understood the treatments better and how treatment can reduce the risk of transmitting HIV to another person. One thing I want my friends and family to know is that I may be HIV-positive, but HIV doesn’t have to control me.

“One thing I want my friends and family to know is that I may be HIV-positive, but HIV doesn’t have to control me.”

— A myHIVteam member

HIV Is Not the End

If you are diagnosed with HIV, it is not the end. You can lead a normal life and do what you dreamed of. We do not have to fight alone. We can fight together. Supporting each other makes us stronger and more determined!

This article was written by myHIVteam member Xavier as part of the Member Spotlight Series. Xavier likes to lie in bed and listen to relaxing sounds like thunderstorms, a river flowing, or birds chirping in the forest.