I was born HIV positive in the 90s AMA

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I was angry at my mother. But in all reality I have no idea on anything about her life. She died after giving birth to me. My sister who is a year older doesn't have HIV. I have so many questions that I can't have answers to.

Dude, black out all identifying information on your document.

Steal someone's identity at the risk of getting HIV I think not.

:D my type of humor my guy

What's it like living with HIV in the COVID era?

So early. Thanks for asking. It has honestly given me some of the longest lasting peace in my heart that I could hold on to. You can call it twisted. But the world is experiencing life as I do. I don't feel good that such a bad thing is happening. But I feel better knowing more people know what it's like. I still worked my FF job until they didn't have hours and now I work outside interacting with people. I have no fear of it. I guess you could say I'm a special case lol.

I appreciate this answer. Real talk OP. It might be twisted, but it's also totally understandable... and reality itself is twisted af, no matter how people might want to think otherwise. If you think it ain't twisted, you just haven't seen enough shit yet.

"if it takes shit to make bliss Well then I feel pretty blissfully." Mm song hehe I was raised being told that life isn't fair. And won't ever be. And that's okay. We don't all have the same skills. Or the opportunity.

Great song. Modest Mouse got me through some hard times. Love them. ❤️

Edit: Specifically Edit The Sad Parts got me through a pretty rough patch. It’s almost hard to listen to now tbh because it takes me back there.

Little Motel here. It's good to bring out that anger too. Just to see all that you have inside you. Bukowski and Bury me with it are real nice.

I have been confirmed Poz for the last two years. I had a CD4 of 7 when I was diagnosed. Needless to say I was going through hell. Due to that, I dont fear this virus. If it's my time, then it's my time.

I've been hospitalized countless times. At least 25 times, even now more than 1 for each year of my life, doctors have told not only my parents, but me directly as well, that they do not think I have any chance to make it through. I'm just a sad song about a lifelong hospital stay.
I welcome whatever may come.

Are you male or female?

Male

European or North American?

North American Native. Alaskan.

Do you live in Alaska? (I do too) I'm also immunocompromised from an organ transplant.

only visited. makes more sense when you see im adopted.

Where do you live now? How are your numbers?

Midwest. Last test was under 50 CD4. Last conclusive viral load was over 36,000. Def not bad for years of missing treatment.

How has being HIV positive impacted your life? Like how much do you have to spend on treatments? What are day to day issue that you have to deal with?

Treatment is expensive. Testing can be done monthly when conditions aren't great. Medicine was on the way to becoming cheaper but we can't have our cake and eat it too. I grew up with siblings on trials for medicines widespread today. We went from dozens of different ones multiple times a day and now you can take a single pill with 2-3 parts and be fine if that's what works for you.

That's great that things got better, can I ask around how much it costs? It's unbelievable the situation our medical system must put you and your family in :(

I fell asleep answering this one. There are programs that make it free. Growing up you qualify for government assistance and there are various places willing to help HIV positive people further. If anyone is out there scared and don't know what to do. Start at Rainn.

There are far too many day to day issues to think about. I was in the hospital a lot for problems with my lungs. Also arthritis and other joint problems are common in those born with HIV. I always thought everyone got tired so easily and joints hurt after short periods and they just pushed through it.

I have a question about the joint problems, I have been HIV positive for 10 years as well type 1 diabetes for over 34 years and in the last year all my joints have screwed up on me to the point I have trouble taken my shots, I can't even scratch my back. out of the 11+ doctors I see all of them just keep sending me to physical therapy, is there anything you find that helps with your joint problems?

I smoke weed. I grew up in a conservative Christian family being told all drugs are bad mmkay. But it's also a reason I was probably estranged from the family. But it's also the only thing that can bring me relief. Not only from physical pain. But it lightens my heart. The effects are great. I don't even need to smoke throughout the day to feel the benefits. You can smoke nightly when the day is done and even when waking up in the morning pain and inflammation are greatly reduced and stay so the whole day. I started vaping cbd oil a few years ago. It was life changing.

I smoke weed.

You smoke joints for your joint problems. Excellent! 👍🏻

:3

Feel free to ignore any or all of these.

You alluded to having siblings that are also HIV positive (I could be wrong). Has your mother shared her reasoning for choosing to give birth to multiple children that are HIV positive? Did she know at the time? Did religion play a part in her decision?

Also...

Do you hold any ill will towards your parents? How is/was your relationship with them growing up?

So. Family's come up. This blew up a lot faster than I wanted. I'm adopted. Everyone I was raised with is adopted. Everyone I refer to in my family, except for my sister Claudia, will be adopted. My mother died shortly after birth. I know nothing about my father. My sister Claudia, only a year older, is not HIV positive. My adopted mother and father are white. The two brothers I was raised with are black and HIV positive. I answered my feelings on my mother on another comment. Sadly I will point you to find that.

AceTheCookie, my comment was removed because it was not a question, so I'm going to try again to post it as a reply:

The way you worded this is full of subtle despair, and I hope you’re as OK as you can be, whatever that means. People I’ve met who were born with HIV tend not to have the most stable or pleasant family backgrounds and really struggle with the trauma of growing up in that. If that’s your situation, there is help available to you, even if you may not be able to access it right now. If you have a rough background and are seeking therapy in the future, look for a therapist or support group that specializes in childhood trauma, because it wires brains in a very, very particular way.

If you live in the USA and have to pay for medical treatment, I’m sorry your leadership and culture lack the ethics to demand universal healthcare as your human right.

Keep talking and keep being open. You sound lost, but that’s OK, and there are people who care, including strangers here. What happened to you is not fair. It may affect how you experience your world now, but it is not who you are. There are professionals and support systems who can help you. Please don’t hide and become insular as a means of self-protection. Ask for help, and when you don’t get it, keep asking.

In time,you will know the tragic extent of my failings.

Heh. Sorry for quoting a game on such a serious thing. But yeah. This is it buddy. Stay tuned.

Please stick around.

That is not a decision you or I get to make anymore.

I’m sorry your leadership and culture lack the ethics to demand universal healthcare as your human right.

There is absolutely nothing ethical about stealing the money of others to give it away. You could argue that it is moral, but certainly not ethical.

I have to agree. There are foundations where people give of their own money to help. And if there isn't someone steps up to start one. We don't need someone to compel us to give to causes close to us,or ones we have no quarrel with. We can give on our own.

I’m really glad that things have come along with treatments in the last couple of decades. I worked in a hospital when HIV first came on the scene. I also lost a family member to the disease. Even though it was medically acquired he went through a lot of prejudice and lost his job. He had slurs about being homosexual (which was not accepted at the time). Have you experienced much prejudice?

When people learn there is always an initial reaction. Some alright. There is still a huge bias and negative stigma even towards children born with it. I have experienced mostly negative reactions but there are some people that can look past even things like that.

Have you had to confront a sexual partner about it and if so how did that go?

Not too fond of sexual experiences because of the disease and things while growing up. But I've kept them limited to partners I've been with for a time and they know of it beforehand, because it would be a crime to do otherwise. I've chosen relationships because I could see myself being with that person for a long time. Responses have varied from uncaring and indifference to caring deeply enough to want a family no matter the consequences.

and they know of it beforehand, because it would be a crime to do otherwise.

Not in california

It's still against the law, just a misdemeanor offense now.

Glad I moved out of the shithole as a kid.

In San Francisco there is a small scene, “POS Parties”, where everyone in attendance is HIV+. While group sex is often involved, it can also be a great support group and social scene. It can be very liberating for people who face so much stigma to have an environment where in many ways, they can act more freely than the rest of society.

Have you ever heard of these parties, and would you be interested in attending?

Personally no. It sounds like a great experience. Just not my boat.

Do you have any friends with HIV aswell?

Not anymore.

I assume that when you were young you were kept in the dark about a lot of information about HIV, but when did you finally learn about it and the stigma it carries?

Correct. There are many situations I didn't fully grasp, or even know of, until I got older.

What did you think about Eazy-E dying and Magic Johnson contracting HIV?

Tbh. I was super sheltered. Never into sports. Never into anything too deeply to care too much really. It's so much different growing up like this compared to contracting it. I guess from what I do remember on hearing famous people still getting it was shock. While still prevalent HIV is a very manageable disease now.

Do you experience restrictions in your day-to-day life that people without HIV likely are not aware of? Like any international travel restrictions? Dietary? Sports you were not allowed to play? Etc. Giving blood is obviously not allowed. Any restrictions similar to that?

Not specifically for HIV. But everything that came along. Time for a little medical history on me. You could fill a 10' room with cases lining the walls with documents written on my stays in the hospital. Most of the time I was in for some kind of respiratory infection. You name it. I've probably had it. Tbh, pertussis, every pneumonia you can think of, asthma which I somehow outgrew, RI without names, I've been hospitalized for colds and flu's, bronchitis and things the doctors CA t explain. I grew up thinking this was somewhat normal. Maybe not all the time spent at the hospital. But the inhaler I carried wasn't the only one in the world. And my childlike mind told me that everyone had joint paint and got tired very easily. Growing up I didn't know it was bad. I was just happy to be here.

Most of the time I was in for some kind of respiratory infection. You name it. I've probably had it. Tbh, pertussis, every pneumonia you can think of, asthma which I somehow outgrew, RI without names, I've been hospitalized for colds and flu's, bronchitis and things the doctors CA t explain.

Oh wow, that is not good in regard of the Coronavirus. Stay safe!

TBH My roommates and I might've had it already. Leading up to it I had a RI multiple times. I was in the hospital and they couldnt tell me what it was with all their tests. All of them. They thought it was bacterial. I'm thinking it was a first wave of COVID.

Your post history shows that this has progressed to AIDS and that you are also battling cancer. How has being an AIDS patient impacted your cancer treatment?

Couldn't tell you. I haven't been back since the diagnosis.

You had mentioned a bit in another thread about the treatment methods needing to halt your HIV treatments. Did they mention anything about what type of treatment they would want to do at all? I know autoimmune disorders typically disqualify you from immunotherapy, but there are other really great methods that might work for you

I stopped because I have nothing. No money. No more family. No friends. Even with all the assistance. Even if everyone in the world came together to give me a better life. What would it be worth?

I’m so heartbroken for you. I want to squeeze you tightly, but not too tight because I know your joints hurt

there will be lots of popping. you havent broken me. but its like cracking your knuckles for your entire body so squeeze away.

Seek assistance with state run medical centers, particularly those with teaching hospitals. County hospitals also.

hmmm. If I leave what I said this might turn against the rules. Don't worry.

My brother has HIV and I've always been supportive and I've never looked down on him or judged him for having it. But I feel like it's hard to talk to him about it because he has other psychological stuff that's unrelated to his HIV that makes it more complicated. What I'm trying to ask is how do I communicate my support to him without hurting him? Or talk about it in a way that's not like a typical ignorant moron?

Ask. And listen. It is not you who's life has been flipped upside down.

My brothers are also positive but have cerebral palsy as well. One is basically a child. Just take it slow. Let things flow between you organically.

What are the most difficult parts for you in terms of managing HIV?

Having my whole life hidden up from everyone since the start makes it hard for me to do so even when I get close to people. It's probably the main reason I'm in the position I am now. Hard to ask for help when you've been raised to do it yourself.

Wasn't expecting this much guys. I'll get to things.

I've been HIV+ for the past 20 years.

Have you always been undetectable? When were you diagnosed?

Undetectable most of the time. My brothers and I were going through trials on combinations and new anti retro viral therapies. At times we took pills multiple times a day. We've taken dozens. We've taken different ones day and night. We were all diagnosed at birth.

Other than people not understanding that U = U, what’s the biggest misconception or stigma HIV+ people still face today? Also, thank you for doing this and sharing your story.

You can get it without fucking or getting into a knife fight with me. The ignorance still astounds me.

Recently, I believe, the second man ever was just cured of HIV. Hopefully the treatment he underwent becomes widely available.

Anyways for my question: Has this ever put a strain on your relationship with your parents?

I know I would not have been mature enough to handle this with grace, at say, age 15-18.

They did more than many people would do for anyone else. For that I thank them and can never repay them. I wish I could get some cool bone marrow. I truly hope this doesn't push the virus to change though. Imagine a diesease like that. It already targets you immune system. What if completely camouflages, what if it changes so even these people can be infected once again. Scary times. Even my hope is fading.

I’d gladly give you mine.

something like less than .1% in the world have it. There wouldn't be enough if everyone of them offered to start donating when they could. It's also very dangerous. For the donor.

What was your childhood like? Did your teachers know? Could you play sports?

You are not obligated to tell anyone by law. I am protected to the point that my employer doesn't need to know. I don't tell them. Even if I believe they might be accepting. I think after facing it a few times my family kept it secret. There's too much ignorance.

I totally understand this. How were interactions if you scraped your knee as a kid or got a cut? I’m so sorry that you have had a world of stress on your shoulders since birth.

No worries. Just like any other. Albeit even as a kid I knew my wounds were special. Only my parents or designated people were allowed to help me. That was weird for some people. Some were told after the fact.

Favorite anime?

Ayyyye. Plugging that KILL LA KILL. Ryuko is best girl. If you don't cry for best uniform as well you're a monster.

DON'T LOSE YOUR WAY!!

Sadly. I don't think I ever had one.

Who's your favorite Disney's princess?

Maybe the Beauty. My life has made me look like a beast to others. It's nice to be accepted.

I'm going to just say "i'm so very grateful you're here today".

I lost a lot of friends during the worst years of the crisis. How is your health? How does HIV affect you today?

Sorry to disappoint. It will soon overtake me. It already has WBC under 40. Viral load is probably already back to 10s of thousands. Not bad. But already small things are happening that show me most definitely that I have 0 immune system.

What changed from being undetectable to such a violent decline?

Years of being off of medication therapy.

Ah that would do it. Why did the meds stop?

No money. No stability.

Friend, there are resources, and it's not a sign of weakness. Look, I'm supposed to be "tough" as a firefighter, but even I've had to utilize public assistance for all my surgeries and weird health despair. As for stability? I'm only alive today because I move so much, but help is always near. It varies state to state but there are options. Would you like some help?

I want more stability than just having bills taken care of.

This may sound odd but... How do you cope with having to bear consequences of something that happened well before you were even born?

Does HIV present a past event haunting you? Or is it just an ongoing problem? In other words, how do you go on with your life?

You can't. I don't understand it. My head can't wrap around it. Nothing I'm told adds up about my family. What I was told by my adopted doesn't line up with the small bits I've been told by my sister and aunt. I will never know my mother. I will never know why I have HIV and why my sister, only a year older with the same father, does not. I will probably never know why my mother was adopted. Why she was estranged from her family. Or why I was from mine.

Is there anything we can do to make you happier, feel better or help with money?

There is nothing you can do for me here. I hope that this can change for someone else tho. I didn't want an easy way out. I didn't want someone to pay my way. I didn't even want someone to be there and need them to understand or to do anything really. I just wish that someone had stayed. That's all some people need... Sometimes that's not enough, just because you weren't the right person. or people.

Are you able you drink alcohol to the point of drunkenness?

Oh yess

Thanks for sharing!

Have you talked about this with your parents?

How else would I be born with a sexually transmitted disease.

Yes, but have you discussed your feelings about it with them?

Yes

How did that conversation go? What topics were discussed and how did you all approach them and react?

Nothing different than setting some things straight with them considering they've overseen my treatment and well-being since I was born. Just misunderstandings between us I suppose.

How did your parents contract the disease?

I'll have to ask if I can ever meet them.

I don't know much,if anything, about them.

I see from your post history that you play factorio. Have you tried Satisfactory yet?

It's a beautiful game, first person factorio basically, but less stressful as the enemies are much fewer and pollution doesn't affect them.

It's an alpha release but extremely polished and I think you would like it :)

It would be fun. But I couldn't get too far into it. just would lose interest a few mins in.

Are you optimistic about the medical community finding a real cure at some point?

I know it's next to meaningless since I'm a random internet stranger but I'd do anything to help people in your situation. It's completely fucked.

Bone marrow of individuals that have genes(I believe they disallow the virus from even attaching to wbc) have successfully been moved into 2 people across the world. They apparently don't need medicine. A 'cure' is upon us. It is just very dangerous.

Are you sure?

Ask me. Ask me the deepest thing you can think of.

Where are your friends and family? All dead or did you leave them/they leave you?

All of the above.

Do you miss anyone still alive? You sound pretty ready to die. At times I wanted to die I kept going for the idea that I still had connections with others here. I have selfish intentions with this question but I’m curious about your mindset. Is there no one left worth sticking around for? Even if your death is inevitable because of the diseases, is there no one worth emotionally sticking around a little longer for? If not and you really feel completely alone on this planet, what is that like?

My biological sister and I are on good terms. We've only met once. Past that it's just pain. I know I'm not alone in my struggle. There are billions of people. Many have it worse. I'm just too tired.

What's it been like "from the inside" as treatments improved over the last few decades?

Back in the early 90's life expectancy for those with HIV was less than 15 years. By the late 90's it was up around 20 years and the grinding progress of science accelerated faster it now puts it up near-normal.

As a kid did you feel like you just weren't going to survive much into adulthood?

Nah. I was taken in by a good family that did everything they could to make sure I was treated. Even got more siblings with it. I knew I was gonna make it. Since I remember I was told liver will probably conk out around 50 with meds

What are some facts you wish everyone knew about HIV?

Unless we're fucking or fighting don't worry. (not you specifically) Your fragile ass ain't gettin it.

Sorry if you were looking for a list. That's all I care that people know.

I'm curious if you would be comfortable sharing more about your internal experiences pre- and post-diagnosis, along with how this might have affected your opinions or worldview about fairness, resentment, blame, shame, and privilege?

Yes yes of course. Beforehand I thought nothing. I wasn't thought OF. You see I was diagnosed when I was found by a medical professional. As in in the womb. I have no other worldview than the one I've worked with since birth. The world isn't fair. You can't make it like that. And if you try you will just stand on someone else's back to try and right a wrong.

Hi !

Do you feel "limited" in your life because of HIV ? Like you're hesitant to have kids, get married or have difficulty projecting yourself in the future (even though today you can live a normal life with the virus with medications)

Simply put. Yes. But you can also look at it this way. Growing up the way I did and everything that happened I still want things like a family and sexy time lmao. They just aren't priorities. I have a different perspective. And goals than others do.

What is your favorite memory from your life so far?

I don't know if you could ask me for a favorite memory like that. There's so many for different parts. I'd have to tell you about a pair of online friends I had growing up. They lived near each other in a city and were staying over at a friends. We were on skype. They had their laptops setup in different rooms. At some point one of them went to do something and the other ran into their room and took something. I didn't know what it was until the other got back. It was a chocolate bar. At that point I was between a back an forth with them yelling into the skype call. I can only describe the following as being the most cartoonish thing I had ever seen real life imitate as I see them start running around the house in the background of their two screens.

What is your biggest fear? And what did you eat for breakfast?

Breakfast is what you have in the morning right? So I stayed up all night with a glass of whiskey and nicotine. My biggest fear now. That no one will know me.

How is the diarrhea going? Medical doc says it’s not linked to anything so did you eat something bad? Too much ice cream?

Hope your diarrhea is the fun kind and not the miserable kind!

Have always had issues with dairy. It's sporadic. Sometimes Stuff makes me blow up sometimes it doesn't. It's never bad for me really. I feel bad after a big cheese binge for those around me tho.

Lol 😂 diarrhea never stopped anyone from eating dairy. It’s worth it 100%.

It's always worth it lmao

How do you feel about this south park clip?

https://www.youtube.com/watch?v=Ai4b7j5a_7M

Fucking died. This a good time. Yeah. I've cracked a few AIDS jokes to fit in. At points I felt bad about it. But. What good is humor if not to lighten the heavy dark moments of life.

Not sure if this has been asked but what do you like to do in your free time?

Game, listen to music and watch stuff mostly. I used to read, write and draw a lot. Haven't done so in years.

Have you seen/heard of the Netflix show POSE?

No

Do you like to play video games?

Most of what i do now.

Why did your parents have multiple children when they knew what would happen?

My biological sister who's a year older than I am doesn't have it. The siblings I speak of are all from different families adopted by a couple. My mom and dad.

resist the urge to assume. read about me some more. All the questions you've presented are now there.

Are you hopeful about a cure coming in the near future? I’ve heard recently that the second person to ever be cured of HIV was achieved within the last year or so, and that a cure could be seen within the next decade or two. I’m curious what you think or what you know, since you probably follow the progress being made more than I would

My thoughts and feelings on this are on another chain. I am hopeful. But wary. And scared.

What has your experience been when you reveal this to prospective partners?

I'm sorry to answer like this but it has been answered somewhere. But it has been like any other. Some take it better than others.

Your medical document says you have a history of tuberculosis, does that mean you have had TB before?

yep

My mom had TB before I was born, so I have latent tb. She told me stories of how she had to go to a special tb hospital for 6 months because everyone with it had to be quarantined. Did you have to do the same thing? Or could you stay at home? How long was the treatment?

I believe I was just quarantined like usual as to me also being HIV+ and susceptible to anything contagious. A few weeks in and out of the hospital. Life as usual with a few more tests.

Have you ever responded like Cartman on south park?

"I'm not just sure. Im HIV positive."

I wish. I have made jokes and he's been referenced here lmao. Would be epic.

What kind of cancer is it that you have? Sorry to hear you have AIDS. When were you diagnosed with AIDS? Why did you stop getting treatments? What was wrong with you in the hospital last year? I assume you got better from that. Did you manage to get your car fixed?

Chest. Honestly I'm sorry for putting that out there. I haven't been back to see if it really was cancer. The truth is I was hospitalized for a bad respiratory infection. Here I was diag with AIDS. I simply don't have money for even food. How will I get treatment? Even free. They did scans and when they came back there were nodules everywhere like a heavy infec. But they also say scar tissue and things from TB as a kid. Also that some nodules were bigger than infection size. It's unknown what it is but my chest feels worse. Even more so than how it was just chilling. I'm usually not wrong with feeling like this. My car is still broken. Some kinda engine leak and now it's killing batteries.

What’s been the happiest moment in your life?

The moment that I came to the Truth that sight alone could invoke feelings of love inside of you. I don't have the words to describe it. I had seen her a few times before. Maybe it was a culmination of the week leading to it. Or the life. But in that moment time felt like it stopped. she was on her knees in a group of people. her head raised and tears were streaming down her face. i reached out. but her friends made it there first.

Earlier you mentioned that you're afraid people will never really know you.

What do you wish people knew about you?

Things I wished people knew are not possible anymore. Somethings can never be told. Somethings have been lost. But I guess now I want people to know at least part of my struggle. not because i want your pity. because i tried so hard to make it so far.

Is it true that there is a cure for but expensive?

There kinda is. It's not really economical side that is the problem but the adverse effects. First you would need to kill the patients immune system and then get a suitable bonemarrow donation. Basically the same treatment as leukemia.

There has been 2 people to my knowledge that have been cured of HIV as a side effect of leukemia treatment.

But the risks of the treatment are far worse than just eating antivirals for the rest of your life.

My understanding (last I read)is that this treatment makes HIV levels undetectable, but we don't know yet if long term it is a cure.

This. What happens when we exhaust our natural immunity by giving it to everyone and we slowly watch the virus change around that?

It doesn't matter how long that takes. This is a war. The viruses can reproduce and attack much easier. they have no emotion. they have no problems for us to work through. The weapons we use are ineffective and weak. They do not target the virus. That is something we are incapable of. a truly terrifying enemy.

Did you take AZT? I love the musical RENT.

A lil search shows that's zidovudine. I have taken the generic Retrovir but it was only for a while when I was a teen I believe.