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Walk in My Shoes - Living with HIV

How HIV Changed My Life


Updated May 09, 2014

I have worked in HIV since 1996. I have seen hundreds of people infected with HIV, many of them suffering from AIDS. My role in the HIV community is to provide medical care, to educate patients and families, and to offer support. But what I have found out quite unexpectedly, is that my patients have become my teachers in many ways. Their daily struggle goes unnoticed by most but deserves to be told. Walk in their shoes now if only for a moment.

Getting the news
The words echo in my head like a gunshot in the night. Panic begins to swell inside, my heart races and my chest pounds in fear. The sky, so blue and bright just a short time ago, now looks dull and gray. The people around me continue about their daily lives. Don't they what has happened? I have just been told I am HIV positive, and realize my life will never be the same. It's been a week now, and I can't stop thinking about it. It's the first thing I think about each morning and the thing that keeps me up all night. What I dread the most, is the fact that this feeling of fear and isolation may never go away. I feel that I will never be able to escape the realization that I am sick and too frightened to tell anyone.
HIV positive...day 1

How do I tell? Who do I tell?
I have never felt so alone. I have to tell someone what has happened but who should I tell. Nobody will understand. I fear telling my family most of all. They will never forgive me. They won't understand. I'm afraid to tell anyone because of what they may think, what they may do. But I feel so alone. I'm not going to tell a soul. People seem to look at me differently now. Maybe they already know what has happened. I have to tell someone. My family will have to understand...or will they? What's worse, I may have infected the one I love most, but how do I break the news. Our relationship will never be the same...how could it. If I passed this on to someone else, I will never forgive myself. I have to tell...but if I do I may lose the one I love so much. I don't know what to do. I'm so tired.
How to tell someone I have HIV

I'm so tired
It's ten o'clock in the morning, I have to get out of this bed. Another work day missed. How do I explain my absence to the boss? I can't tell him the truth. I'm exhausted. Seems like I can never get enough sleep. The bed is soaked again. The night sweats make it so hard to rest. I have my first doctor's appointment in the morning. I am afraid of what I may hear. Am I going to die? Will I have to take a bunch of pills? How am I ever going to pay for all of this. I am so tired.
Recognizing acute HIV

So much to learn
I am still so tired. My doctor seems very nice but I didn't understand most of what was said. There's just too much information to remember. CD4, T-cells, viral loads...what does it all mean? The nurse is going to come in and tell me about the medicines I am going to take. I've heard some real horror stories about HIV meds. Do I really need them so soon? Other than being tired, I really don't feel that bad. But, I agreed to give it a try. I hope I made the right decision. Take with food...take on an empty stomach...three pills twice a day...or is it two pills three times a day. How am I ever going to remember all this? And so many side effects to worry about. I wonder if I will have any problems? I hope I made the right decision.
HIV Drug Information

I feel worse
There is no way I can take these meds with food. I feel like I am going to throw-up. I always feel like I'm going to throw-up. The pills are helping...my counts are better. So why do I feel so bad? I felt better when I wasn't taking anything. My pills cause diarrhea. So I will take these other pills to stop the diarrhea. That makes an even dozen now. Damn! I forgot another dose. Well that's OK. It's only one dose. What can it hurt? Plus I feel pretty good today. I don't want to throw-up again. I saw my doctor today. My counts are better. The drugs seem to be working. But my insurance doesn't want to cover the cost. How am I going to pay for them. I missed another day of work today. Just too tired to get out of bed.
Medication adherence tips

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