24 People On What It’s Like Living With HIV
When I was first diagnosed, I was planning for my funeral. I never thought I would be planning my granddaughter's wedding.
By 
Charlie Shaw
1. NurseChelsea
My mom wanted me to tell her story. She was a Phlebotomist for 30 years, she worked the night shift for a hospital that had contracts with nursing facilities. She had a route and every night would go to the facilities to draw their patients labs. She also would be on call for STAT lab draws. Eight years ago she was called to a STAT draw at a nursing home. Something happened with the vacutainer which is the plastic piece the tubes go into. Blood started squirting out of the patient and into my moms mouth and eyes. After she cleaned herself up and was walking out of the facility the nurse started running after her. That’s when she was told the patient had HIV and Hep C. When she got back to the hospital they told her she had a very slim chance she would contract anything. Two months later she was diagnosed with Hep C, 6 months after that HIV. She lives a relatively normal life except that she can’t work and is on disability. She had chronic pain from multiple back surgeries before but with the HIV her body is too weak to have a job. Her levels are undetectable thanks to the cocktail of drugs. She has her good days and her bad. But recently found out the HIV was beginning to affect her brain and now has areas where damage has been made which affects her memory. HIV is no longer a death sentence but will take years from her life.
2. never_ever_right
It’s fine! Just sort of…background noise. I don’t have side effects (I used to. Crixivan nearly killed me.) It’s a couple of trips to the doctor a year and that’s pretty much it.
3. tvmediaguy
I’m positive. Been so for a decade. At first, the meds were horrible. The number 1 side effect is unbelievably real and vivid nightmares. Not dreams… But nightmares. It was tough getting past those the first few weeks… But they eventually faded away. Next major side effect is loss of short term memory. I just kind of laugh about that part now. But, by far… The most difficult part of being positive is having to tell other people. I don’t mean family or friends… That part wasn’t hard for me. I’m speaking of casual encounters at bars and such. Gone are the days of casually hooking up with some hot dude at the bar. Now… There has to be a “discussion” which always kills the deal. Makes it very hard to date… And I don’t do it very much because frankly I feel like damaged goods. I broke the rules. Now I have to pay for it. The drugs aren’t bad… But having to explain to people my status… Is. Thats my experience.
4. nights_into_dreams
I take Complera, it’s a once-a-day. I have it with breakfast every morning along with an antidepressant. It seems unreal. In one pill is the means to prop up my failing immune system, a body augmented by artificial means. If you stop to think about it, it almost borders on science fiction.
5. I-said-what-what
I’m a physician. I spent part of my intern year at a large urban Veterans Administration hospital working at the HIV clinic. The patients tended to be older guys who picked up the bug using injection drugs.
It was amazing talking to guys who had been diagnosed before the introduction of protease inhibitors or any kind of HAART at all. When they were diagnosed, HIV was basically a death sentence. Now, it’s like high blood pressure. Take your meds, see your doctor a few times a year, and your life expectancy is minimally changed.One guy said, “When I was first diagnosed, I was planning for my funeral. I never thought I would be planning my granddaughter’s wedding.”
6. highfiveohwaitshit
For the first few weeks it can only be described as pure and utter mental hell as you recall everything you were taught about HIV and AIDS and what it means for your suddenly dramatically shortened life.
And then you see a specialist who basically says, “You’re going to be just fine, calm down. Take this pill every day and don’t skip days.”
And then you start to do research on what it means to have HIV in today’s day and age, and you realize that it’s not really as terrible as it used to be. It definitely sucks and I would take back my choices if I could in a heartbeat, but I can’t so that’s immaterial and I’m going to keep living the rest of my long and healthy life as best as I can with this.
The side effects of the medication are different for everybody; For the first week or so on Atripla I was experiencing some bizarre dreams, dizziness, a general lack of energy in the morning, and a mild rash. All of these are quite common, and all are now almost completely gone as I’m adjusting to the meds. And with that, the trauma is slowly fading away too. I’m getting more and more used to the idea that I’m going to live long and healthy.
I’m also immensely thankful that I wasn’t born in a time where there would have been no hope for me. Modern medicine is pretty great.
7. teaza88
Not HIV positive myself, but both my parents are. My dad died from it when I was 6, but other than that life is pretty normal aside for a few extra hospital/doctor trips on my mums part. Have a lot of good friends from support camps and stuff like that. Its a bit weird sometimes with the social stigma attached, it took me quite a while but most of my close friends know now. If I’m not sure i can trust someone I usually just tell them dad died of liver cancer.
As for how I was born without it? Apparently I was one of the first, but its pretty common these days. Mum had to take extra pills when she was pregnant with me, I was a Caesarean (to minimize risk of accidentally ingesting blood) and I was never breast fed.
Mum is super healthy, working full time, playing sport and in a new long term relationship. We’re all holding out hope that in the future HIV can be eradicated.
8. YourFairyGodmother
Yah, it’s not quite as rosy as most of the folks here are saying.
Now, I’ve been poz for probably thirty years and on the meds for over 20 years. Used to be high dose AZT which was pretty much poison. And the other ‘d’ drugs (ddi and ddt ?) weren’t fun either. Not known whether it was the drugs or the HIV or both that cause neuropthy but I’ve got it pretty nasty in hands and feet. Feet hurt like hell. In the cold, my hands and feet go from chilly immediately to FUCKING DAMN THEY HURT! just like that.
Chronic diarrhea is common and, to coin a phrase, a pain in the ass.
Then there’s the HAND – HIV Associated Neurocognitive Disorder. That’s a kinder, gentler word for what used to be called AIDS related dementia. To be fair, actual dementia due to HIV is rarely seen anymore but high-functioning people with cognitive impairment feel it’s about the worst thing that could happen to us.
9. DrRam121
I always hate posts that start out like this, but I am not HIV positive. I am however in the healthcare field and had a needle stick accident with an HIV positive patient. Interestingly enough, there is only a .3% chance of contracting HIV from such an incident. I was in school at the time (still am), but I had to escort my patient to the hospital 1.5 blocks away and we both had to get blood drawn. I then went on prophylactic HIV meds. Let me tell you, they might be miracle drugs, but I couldn’t trust a fart for a month and a half. They decreased my appetite and tore up my stomach. Other than that though, I was fine. I had tests at 1 month, 3 months, 6 months and 1 year. All of them were negative and my wife and I were very happy about that.
10. GhostalMedia
My father in law has been positive for several years and, unfortunately he is now suffering from dementia as a result of the virus.
There are good days and bad days. But the bad days are frustrating as hell for him and the family.
11. Silas420
I contracted HIV sexually about 6 months ago. Meds really kicked my ass at first. Made it hard to get around, and get everyday things done. I’ve changed meds 3 times now. I start Stribild tonight. Not looking forward to the side effects. I often feel fatigued, or achey. Aside from the depression and anxiety it isn’t all that bad. Doctors encourage me to be sexually active but I’ve never been more turned off by the idea.
12. IFellinLava
I’ve been Positive for 3 years. I just take one pill before bedtime (Atripla) and that’s it. I go to the doctor a couple times a year to make sure everything is in working order as well. I feel exactly the same health wise before I had HIV and I don’t really think about it anymore. Also being a gay guy there are no sexual issues cause only maybe 10% of guys I come across have a problem with it. Iv’e heard people say diabetes is more difficult to live with than HIV.
13. Orylus
It’s not the death sentence it used to be. After the first year, I did lose most of my friends. By then I asked to be put on meds so I can keep the virus at bay. On Atripla and have been undetectable since then. I do get checked 3 times a year to make sure I’m still doing well on the meds. On a positive note (see what I did there, lol), I get checked for EVERYTHING and in the process, caught a life threatening cancer that would have gone unnoticed otherwise. One could say I was saved by HIV. I have a small but close group of friends that do know and still like me for me. Dating does suck as I live in a city where most guys always ask ‘how safe is safe?’. Unfortunately the gay community isn’t as educated in all places like they should be on HIV. All I can do is keep my head up and stay healthy.
14. khazakant
I dated someone for years who contracted HIV shortly after we met (rapist had it). Didn’t like to talk about it much, I never even saw the pills (I asked about it because I was curious, but got told in a gentle way that it wasn’t any of my business). The first few months were the worst – a lot of times the patient gets very sick and then stabilizes after a little while – but even after that it was bad. In the hospital every few months from stomach pains or some other problem, puked up like every third meal. I don’t even know what else, it was hard to avoid because we were together, but I know there was a lot I didn’t know about. The hospital insisted on providing a therapist for outpatient treatment (this was in Canada) because it’s very common for people who contract HIV through rape to kill themselves.
15. bucknakid14
My brother’s mother-in-law has AIDS. Not HIV anymore, AIDS.
When her youngest daughter was born in ~1984, she had to have a blood transfusion. Back then, they didn’t know. She didn’t find out until years later that she had it. (I’m not really sure how she found out) She was having unprotected sex with her husband the entire time. He never got it. By the time they did find it, it was already AIDS.That was in 1990. She’s now ~60 and has some health problems, but still doing pretty good. :)
16. mel02
I was 25 when I found out, but would have contracted it at 23. I’m 53 now, female, and queer. Probably, I’ll die from something else… Never EVER thought I’d still be here; now I can tell newly infected people the truth: if you’re compliant with meds and live well, your life expectancy is pretty much normal. Have had lots of stigma and shame to work through, and isolation around it being a woman and a lesbian… nobody expects lesbians to have HIV.
17. deathbybrownies
I have difficulty swallowing pills. It becomes difficult to find antiretroviral medication that can be crushed or mixed into liquid suspension.
There’s a liquid med called Norovir that tastes like orange soda and gorilla butthole. Terrible.
Today I’m on Stribild which is a 4 in 1 and it can be crushed. Once a day. Life is good. I get my blood drawn every 3 months and that’s it.
Only other shitty thing that can happen often is medication reactions. Worst ever. Side effects depends on the person. I don’t have any.
18. easybarge
My dad has HIV, he lives a very normal life, never gets sick (he swears the pills kill anything, including the common cold!)
With the way things are going medically, it now looks like he won’t have a shortened life whatsoever, he’s 60 now and fit as anything, looks 45!
19. crazy_loop
My father died of HIV/AIDS when I wad about 9 years old. He contracted it about 6 months after I was born. So about 8 years it took to kill him. All I remember is him being in absolute pain and the doctors having no clue what the hell was going on. They knew about HIV but couldn’t really do anything to stop it. Although I am happy for everyone in this thread who are happily living with it pain free, I can’t help but feel cheated that my dad wasn’t “lucky enough” to catch HIV later on down the track where the medication has caught up to the point it is at now :/
20. sfooonga
I’m 35, been Poz for 5 years and had been hooking up with a guy for a while, but was surprised since he and I didn’t actually do much. I’ve actually never had to take meds, as my body is able to keep the virus under check. I’m part of a research study to determine what makes my body do that. The one odd thing that has changed since I became poz is that I have insanely bad eczema.
21. spadinskiz
I live in Oklahoma and can’t afford health care, so it really sucks. Hoping this Obamacare thing doesn’t get repealed.
22. ms-minne
I’m 27 yo swf found out I was positive in 2006, but caught it in 2005. I was pregnant when I found out, my daughter is negative tho. I handled my diagnosis very poorly and didn’t take meds for 4 years. I found out in 2012 it progressed to AIDS due to my t-cells being 188. I got back on my meds, I take 3 a day with no side effects. My viral load is undetectable and my t-cells are around 450 now. I have a new boyfriend I’m in love with who’s negative, and knows everything.
23. StringBoi
I live a very normal life and have no side effects from my meds (Atripla). It’s not a death sentence anymore. The only thing that keeps me reminded of it is that I go to the doctor often, always getting blood tests and read the results…..and the fact that I’m always wanting to hear theres a cure.
24. smndly
Many doctors would rather have HIV than diabetes. For many, It’s the stigma attached to HIV that makes it a difficult condition to live with and not the condition itself.
