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Author Topic: Just tested positive and working though complicated emotions TLDR  (Read 4244 times)

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Offline Seigmeyer-of-Catarina

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Hello everyone, hope you are all doing well. Iím new to this forum and Iím 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 donít 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). Iím doing surprisingly okay today, but itís 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. Iíve already started biktarvy and Iíll know my results for those tests tomorrow hopefully.

Iím a 30 year old openly gay man in Alabama with a good amount of friends but Iíve 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. Iíve 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 donít know.

Honestly, Iím pretty scared, and Iíve in the past considered myself relatively fearless. Iím afraid of the disappointment from the people I care about. My mom will be devastated, even if I explain that Iíll be okay. Moms always worry you know? An HIV diagnosis just wouldnít 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 donít 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 Iíd feel the same feelings again.

The next thing i want to say is probably one of the hardest things for me to reconcile and itís the reality that, prior to testing positive, I had my own negative attitudes towards HIV. In a way, I canít 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 itís the right thing. But thinking differently of someone for having a virus doesnít align with those values at all. To anyone that reads this, I feel the need to apologize about that. Itís just not right. I think it may be my biggest source of shame.

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

Offline Jim Allen

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #1 on: February 12, 2021, 11:14:53 pm »
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.

Quote
Iím a 30 year old openly gay man in Alabama with a good amount of friends but Iíve 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. Iíve 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 donít 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.

Quote
Honestly, Iím pretty scared, and Iíve in the past considered myself relatively fearless. Iím afraid of the disappointment from the people I care about. My mom will be devastated, even if I explain that Iíll be okay. Moms always worry you know? An HIV diagnosis just wouldnít 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 donít 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 Iíd 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.


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You can read about HIV prevention here:
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Offline Seigmeyer-of-Catarina

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #2 on: February 12, 2021, 11:39:56 pm »
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.

Offline Jim Allen

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #3 on: February 12, 2021, 11:46:44 pm »
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
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline TexasDragon

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #4 on: February 13, 2021, 03:15:15 pm »
Seigmeyer -

I think a lot have tasted that bitter pill.

ĎIíll never get that.í ĎIím careful.í ĎIím not wreckless.í

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.
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20
01-13-2020 Blood Draw - CD4 1064 34% VL <20
09-29-2020 Blood Draw - CD4 972 32% VL <20
03-25-2021 Blood Draw - CD4 1168 38% VL = 26

Offline Seigmeyer-of-Catarina

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #5 on: February 14, 2021, 07:55:11 pm »
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.

Offline TexasDragon

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #6 on: February 14, 2021, 08:05:55 pm »
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.
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20
01-13-2020 Blood Draw - CD4 1064 34% VL <20
09-29-2020 Blood Draw - CD4 972 32% VL <20
03-25-2021 Blood Draw - CD4 1168 38% VL = 26

Offline Seigmeyer-of-Catarina

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #7 on: February 14, 2021, 08:15:45 pm »
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.

Offline Jim Allen

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #8 on: February 15, 2021, 02:28:28 am »
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
« Last Edit: February 15, 2021, 02:31:01 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline ajay1980

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #9 on: March 12, 2021, 11:10:18 pm »
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!

Offline Philodendron

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #10 on: March 16, 2021, 06:47:20 pm »
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.

Offline Seigmeyer-of-Catarina

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #11 on: March 17, 2021, 03:00:56 am »
@aj1989 I finally told my mom last week actually! I havenít 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 itís nice to see that unconditional support. Iím actually really glad I told her, and I feel like itís made us closer and we can be more real with each other.

Offline ajay1980

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Re: Just tested positive and working though complicated emotions TLDR
« Reply #12 on: March 27, 2021, 07:45:43 pm »
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!!

 


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