Just tested positive and working though complicated emotions TLDR

[Seigmeyer-of-Catarina]

Hello everyone, hope you are all doing well. I’m new to this forum and I’m really hoping I can get some advice and maybe a lil support from others who understand. I think I just really need to vent and have a moment to be as open as I can. Super sorry if this is dramatic and long but I don’t have anyone I can share my true thoughts with about this.

To start, I just tested positive for HIV a week ago (2/4/21). I’m doing surprisingly okay today, but it’s still just really hard. Im waiting on some more lab work, and my two main concerns are whether my strain has any drug resistances, and the possibility of secondary infection like hepatitis, which I worry would complicate treatment. I’ve already started biktarvy and I’ll know my results for those tests tomorrow hopefully.

I’m a 30 year old openly gay man in Alabama with a good amount of friends but I’ve only been able to tell one sibling and my boss about my HIV diagnosis. I think I find myself really down about not being able to be open with everyone else. I’ve always been incredible transparent with everyone in my life, and I never feel the need to hide anything, but this just feels so different. Maybe I do still feel shame, I don’t know.

Honestly, I’m pretty scared, and I’ve in the past considered myself relatively fearless. I’m afraid of the disappointment from the people I care about. My mom will be devastated, even if I explain that I’ll be okay. Moms always worry you know? An HIV diagnosis just wouldn’t make sense to a lot of my closest relationships. Some will be so worried, some will be sad, and I could imagine some relationships will gradually end, whether they ever admit to feeling differently towards me or not. I thrive on seeing other people happy and I don’t want to hurt the people I care about. The last time I felt this way was at age 17 when I came out as gay, and I never thought I’d feel the same feelings again.

The next thing i want to say is probably one of the hardest things for me to reconcile and it’s the reality that, prior to testing positive, I had my own negative attitudes towards HIV. In a way, I can’t help but feel like I was in someway apart of the collective stigma towards HIV. I feel angry at myself that it took a positive HIV result to recognize those negative attitudes, and the fact that I could have ever viewed anyone living with HIV differently. I always viewed myself as someone who valued truth, and doing the right thing because it’s the right thing. But thinking differently of someone for having a virus doesn’t align with those values at all. To anyone that reads this, I feel the need to apologize about that. It’s just not right. I think it may be my biggest source of shame.

All in all, you guys I just really want a hug

[Jim Allen]

Sorry to hear about the results.  It can be a lot to digest.

Reading your post, I understand you are still waiting for follow-up results. So you have just had a reactive antibodies result? Until the follow-up results come back, I will ask you to only post in this one thread, thanks.

I’m a 30 year old openly gay man in Alabama with a good amount of friends but I’ve only been able to tell one sibling and my boss about my HIV diagnosis. I think I find myself really down about not being able to be open with everyone else. I’ve always been incredible transparent with everyone in my life, and I never feel the need to hide anything, but this just feels so different. Maybe I do still feel shame, I don’t know.

About not be open with everyone. Look I don't see not sharing ones personal medical conditions with everyone as not being open.  Most people will have, develop or acquire one or multiple manageable medical conditions during their lives that they may choose not to advertise to everyone. It is just not relevant for most other people to know about these things.

Honestly, I’m pretty scared, and I’ve in the past considered myself relatively fearless. I’m afraid of the disappointment from the people I care about. My mom will be devastated, even if I explain that I’ll be okay. Moms always worry you know? An HIV diagnosis just wouldn’t make sense to a lot of my closest relationships. Some will be so worried, some will be sad, and I could imagine some relationships will gradually end, whether they ever admit to feeling differently towards me or not. I thrive on seeing other people happy and I don’t want to hurt the people I care about. The last time I felt this way was at age 17 when I came out as gay, and I never thought I’d feel the same feelings again.

The thing about sharing something personal is you can't control how others will react or think.  I would say perhaps before sharing your HIV status with others consider taking some time to digest the news and to be more okay with it yourself. 

Glad to read you started treatment though and keep us posted on how you get on.

Best, Jim.

[Seigmeyer-of-Catarina]

Thank you for you response. I received a positive antibody test as well as a follow up blood test which confirmed the diagnosis. I realize my phrasing was probably confusing. To clarify, the test results I'm currently waiting on are for the viral load, CD4 count, and the results for hepatitis.

[Jim Allen]

Hiya.

Thanks for your reply. Until the VL results are in to confirm ill ask you to stay in this one thread.

Understand it can be a rough time, know that you are not alone, and people are here to support you. Also, feel free to post any questions you may have in this thread.

Best, Jim

[TexasDragon]

Seigmeyer -

I think a lot have tasted that bitter pill.

‘I’ll never get that.’ ‘I’m careful.’ ‘I’m not wreckless.’

Then the resulting self-judgement from realizing it did happen to you. So much toxic shame. Seems to be a lot of that going around lately.

Here is a big *HUG* for you.

[Seigmeyer-of-Catarina]

Yeah, I feel like as each day goes by I do feel remarkably better about the whole thing, surprisingly. Something kind of clicked yesterday, and I can't control that I have it, but I do have control over treatment and taking care of my body. As hard as it was initially to see any good, I'm trying to visualize ways this diagnosis can make me a better person, and I think that's the healthiest approach mentally. As odd as it sounds, I think there can be some good to come out of this.

Just to update, I got all my test results finally today, and my next appointment isn't until march 25th, so if anyone is able to, I'd love to try and understand what the results mean. My viral load is 140,000 copies/mL so my only question would pertain to how quickly I could get to undetectable if that's possible to answer. My CD4 percentage is 28% and considered low according to my lab. My CD4 absolute is 958/cmm and had no comment on the lab results. I'm not really sure if these results are pretty standard, good, or indicate that I still have a lot of work to do. I'm fine with whatever they mean as I'm on day 3 with the Biktarvy with no side effects, and I'm doing everything I'm supposed to. Either way I know I'll get where I need to be eventually.

[TexasDragon]

Agreed. I think I am healthier now than before I was diagnosed. I pay more attention to everything.

Look at my stats in my signature line. In one month on Biktarvy, I went from 318,000 to less than 100 and doubled my CD4. I felt like I had a mild flu before starting Biktarvy and within 3 or 4 days I felt great.

It works well. And it starts working day 1.

Make a plan. Stick to the plan. And your plan should be for a long, happy, healthy life.

[Seigmeyer-of-Catarina]

Hell yeah that's good to hear. It could be placebo, but I have absolutely had an increase in energy.

I think only other concerning result involved my liver enzymes ALT and ADL, which were fairly elevated. The hepatitis test was non-reactive, which is great news, so I'm kind of assuming its from my past binge drinking. I'm currently working on sobriety which I started prior to my diagnosis, so I'm more motivated than ever to stick with it. I haven't had a drink in 2 weeks or a cigarette in 10 days so we'll see if those enzymes go down on my next lab in march.

[Jim Allen]

Just to update, I got all my test results finally today, and my next appointment isn't until march 25th, so if anyone is able to, I'd love to try and understand what the results mean. My viral load is 140,000 copies/mL so my only question would pertain to how quickly I could get to undetectable if that's possible to answer. My CD4 percentage is 28% and considered low according to my lab. My CD4 absolute is 958/cmm and had no comment on the lab results. I'm not really sure if these results are pretty standard, good, or indicate that I still have a lot of work to do. I'm fine with whatever they mean as I'm on day 3 with the Biktarvy with no side effects, and I'm doing everything I'm supposed to. Either way I know I'll get where I need to be eventually.

How long it will take to suppress the virus varies per person, sometimes it takes a few weeks, with others it can take 6+ months. However, you should start to see the VL decreasing by your next appointment.

Your CD4 count is fine and, the % is okay. Around 40% would be the average for an HIV negative person, below 14% would be considered extremely low, AIDS. That said the CD4's are not very relevant going forward as they are above any danger zone and you can't do anything to change them directly. More important is that you have started treatment to suppress the virus.

Best, Jim.

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/understanding-lab-work-blood-tests

[ajay1980]

Virtual hug! Telling your mom will be tough.   Probably more so for you to get the words out!  I struggled for 2 weeks to tell my parents.   People told me you don't have to, but for me and that relationship,  I needed to.  The one thing I wanted to prepare myself for was making sure I was armed w the knowledge that I would be ok. That this is a different time and people are living long lives. Sometimes parents surprise us and mom may just want you to be ok, so be prepared to share your treatment plan, #s, etc.  She may need time,  but part of me being ok was letting my parents know, no matter how they reacted.  You got this!! We are here for ya!

[Philodendron]

Hey man,

I completely hear you. I'm going on almost a year since my diagnosis and I've had a hard time telling anyone about my diagnosis. Even talking extensively about it with those who do know. But I also think this allows me time to reconcile and work on myself without the added pressure of having to explain it all to others. You have no obligation to anyone but yourself.

I can tell you this. I am healthier and more focused since the diagnosis. In a way getting this slap of reality made me more focused on caring for myself and my life.

It's a journey and we take it a day at a time. Stay strong my friend.

[Seigmeyer-of-Catarina]

@aj1989 I finally told my mom last week actually! I haven’t checked the forum for a second because of school and work, but she responded pretty rough initially, and then had a full 180 and is in full mom support mode. Shes even been doing her own research about medications etc. and it’s nice to see that unconditional support. I’m actually really glad I told her, and I feel like it’s made us closer and we can be more real with each other.

[ajay1980]

That is awesome! My parents and siblings did the exact same thing of researching everything! Lol it will definitely die down once they see you are doing well on the medication!  Here and there I still get the challenging mental days, but I don't think that will go away.  But so happy to hear you have that mom support! There is nothing better!!