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Author Topic: Online peer support groups?  (Read 1053 times)

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Offline pozguy35

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  • Posts: 7
Online peer support groups?
« on: December 31, 2018, 07:40:11 pm »
Hello all, I  was diagnosed about a month ago and honestly I'm finding it very hard to just carry on day to day while I wait to start my ARV treatment in a couple weeks. I have a lot of anxiety which makes going out hard and thus I'm finding it difficult to find a local support group which can maybe help me deal with this. Does anyone know whether there are any online support groups out there? Or maybe some 1-on-1 counseling online, or something? I really feel like I need to talk to others about this, who really understand what this is like. Right now it feels like my life as I knew it has ended and I'm lost. I don't have a lot of money so paying for professional counseling is out of the question. If anyone knows of an online resource which could help me, where I could talk to another person, I'd greatly appreciate it.
Thank you so much.

Offline Jim Allen

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Re: Online peer support groups?
« Reply #1 on: January 01, 2019, 07:49:04 am »
Hiya

Welcome to the forum, sorry to hear about the diagnosis. I don't know any local resources from Mexico hopefully some more local members will reply to your Spanish thread or this one with suggestions later on this week.

Being newly diagnosed can be very difficult time for people to digest, and I get that you are anxious about the wait to start treatment. What are your CD4's & VL load like?

I agree with this comment Tonny2 BTW

Quote
si tus números son buenos, puedes esperarte unas dos semanas antes de empezar tratamiento, de esta manera, tendrías dos semanas de reserva de medicamento.

Having a few week reserve is nice safety net to have.
Quote
I don't have a lot of money so paying for professional counseling is out of the question.

Well what might help is a self-help "CBT" course I suppose, it might help you cope better with this. Perhaps someone might have good links to reputable free versions but you can also search online for free CBT courses, ill have a look later on tonight if nobody posts anything for you.

Also you are always more than welcome to post and chat here about anything bothering you if you like, a forum might be slightly old fashioned, but its peer support and we are all Living with HIV.

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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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  • Posts: 92
Re: Online peer support groups?
« Reply #2 on: January 01, 2019, 10:38:17 am »
Pozguy35 -

We have all been where you are now - and while it seems hopeless and overwhelming those are feelings that do pass. I was diagnosed just a couple of months ago - in fact was diagnosed, had my first two appointments and lab work, and started Biktarvy all within about 5 weeks. Seems fast now, but at the time it felt like it was taking forever to get something done. This board and the great people on it helped me keep my sanity. So post away - people read and respond. It was and is my only outlet now - other than one friend I met on here and we text now - he has been a great touchstone for me.

Know you are not alone!
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

Offline pozguy35

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Re: Online peer support groups?
« Reply #3 on: January 01, 2019, 01:32:12 pm »
Thank you, Jim, and TexasDragon. I won't lie - this diagnosis has hit me hard, and I'm finding it tough to get back on my feet. I'm thankful that a place like this forum exists, where I can post how I'm feeling, as I haven't had a lot of luck finding face-to-face support.

I think that once I start treatment I'll feel more in control of the situation, but for now I'm still in this period where I feel horrible anxiety each and every morning. The prospect of carrying on through one more day is more than I can bear it seems. It doesn't help that it's the holidays, either. This was the toughest Christmas and New Year I've ever had. I feel so much guilt and shame and regret, too. It feels like it's tearing me up inside and the emotional pain won't leave.

I need to try and find a way to have patience and to remember that time is my friend. Maybe the way I feel now will eventually fade a bit, and the awful panic attacks I'm getting will go away. Right now, though, it's so hard. Today I have the day off because of New Year's Day and I don't know what to do with myself. Feels like I can't stay inside and just watch TV or whatever, but going out is also very stressful a thought. I should mention I was dealing with chronic depression and anxiety before this happened, too, so at times it's just.... overwhelming. I'd like to find someone with whom I could vent, who understands what this is like. This forum is the next best thing and I'm thankful for it. For now my one goal is to start treatment and reach UD. It seems like it's so far off. It doesn't help that it seems like I'm going to have to do the VL and CD4 studies on my own since the local clinic has no appointments left for Jan or Feb. The studies are quite expensive where I live, and that's another stressful thing. But I don't want to give up, I want to live.

Thank you all.

Offline Jim Allen

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Re: Online peer support groups?
« Reply #4 on: January 01, 2019, 02:34:34 pm »
Quote
I won't lie - this diagnosis has hit me hard, and I'm finding it tough to get back on my feet. I'm thankful that a place like this forum exists, where I can post how I'm feeling, as I haven't had a lot of luck finding face-to-face support.

I am really sorry to hear how you feeling at the moment, look early days and I think many go through a sort of grieving process post diagnosis. With a bit of self-care/love and hopefully with some time it will get better.

Also as for the depression, that's a tough one however well you are not alone with that either and we have an entire section on mental health. A lot of the basic day to day stuff like making yourself go out and sport/sleep/ eat well & rest to help support a healthy mind also happen to be the things that are good generally for the physical well-being, it might also help take your mind of the HIV  https://forums.poz.com/index.php?topic=69487.0

Quote
This was the toughest Christmas and New Year I've ever had. I feel so much guilt and shame and regret, too. It feels like it's tearing me up inside and the emotional pain won't leave.

What did you do that was so terribly wrong?

I am guessing nothing, you caught HIV and, well shit happens. I am not dismissing how you feel, but you can't be beating yourself up over something that is totally not a judgment. Its a virus, and I am guessing you did not post an add saying "HIV wanted" or kill the dog on Xmas morning in front of the neighborhood kids, so stop feeling guilty!  ;)

Its a virus and its not very picky as it can and does affect people from all backgrounds and walks of life.

Quote
the local clinic has no appointments left for Jan or Feb

So the earliest they can do a VL/CD4 test would be March but your starting treatment sooner in a few weeks right? That is if I understand you correctly?

Did they mention what treatment they are starting you on?

Yeah, the waiting to start treatment, well I know how that is and the feeling of uncertainty about things. In the past it was pretty standard even if treatment was available to make people wait until they were sick  :'(. Thankfully most health departments understand that starting treatment sooner if possible rather than later is better.

Keep posting, I know its quite time over the holidays at the moment on the forum, but people are listening and you are not alone.

Take it easy

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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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  • Posts: 92
Re: Online peer support groups?
« Reply #5 on: January 01, 2019, 03:25:27 pm »
Pozguy35 -

Yes - keep posting! Those first few weeks are like a fog and no matter how many times someone says ‘You’ll be fine.’ Or ‘The meds really work.’ It’s easy to have your mind run wild with ‘what if’s’ - that’s the challenge. My ID doctor did not seem overly concerned and I’m like ‘What the hell! I’m dying! Do something!’ - and she was polite and informed me she has 50 other HIV patients from every walk of life - with families and careers - that are all doing very well. She said ‘Stick to the plan, and die an old man!’ And the plan takes a little time.

Again - we have all been there. You can do this!
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

Offline MarkintheDark

  • Member
  • Posts: 128
Re: Online peer support groups?
« Reply #6 on: January 01, 2019, 05:02:49 pm »
Welcome pozguy35.  You're in good company here.  We've all walked a mile or more in your shoes.  idk if you've tried it, but AHF has worldwide resources which may be useful to you, perhaps even addressing your concerns sooner than March:
https://www.aidshealth.org/global/

Waiting until March is additional stress you don't need.  Your reaction to the dx is perfectly normal, as much as it feels like your world has been turned upside down.  Of course, meanwhile you have us.  We get it.

Another online resource I've found helpful the past couple of years is here:
https://www.depressionforums.org/forums/forum/12-depression-central/

I mention them particularly given the depression and anxiety you're experiencing.  The site is completely HIV-friendly.  I've been able to be completely honest when I've had issues related to HIV.  They've helped me get over more than a few rough patches.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline harleymc

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  • Posts: 1,180
Re: Online peer support groups?
« Reply #7 on: January 02, 2019, 12:04:07 am »
Hi there.

I'm providing a link to an online CBT course run by the Australian National University.  https://www.moodgym.com.au

Unfortunately it was designed in the days of PCs and is not super pretty on mobiles/ cell phones.  It may not be for you, but I found that I was really surprised with how far I managed to shift my chronic depression with it in just a couple of weeks.

it was only a few years later that I realised how much anxiety drove my depression.

Good luck with it all.

Offline pozguy35

  • Member
  • Posts: 7
Re: Online peer support groups?
« Reply #8 on: January 02, 2019, 02:12:01 pm »
Wow, thank you everyone for the wonderful messages and support. It's more than I could have hoped for and I be sure to check out all the resources you have pointed out.  Mark, thank you for the links to AHF and the depression forum. It sounds like they might have some good advice I could follow. harleymc, thank you for the link to the CBT course. It looks interesting and I'm going to give it a try.

Since my diagnosis I've been trying every day to not stop doing my normal activities, to make sure I still go to the gym, eat well and sleep. I've also found that being busy helps me a little bit, even if it's just going out to walk the dog. I'm trying to give structure to my day so I always have something to do and I don't just stay at home thinking about HIV.

As far as the guilt and shame I mentioned, thank you, Jim for saying that it's just a virus. I think I need to change my perspective from where I'm right now, which is being very hard on myself and thinking stuff like 'you knew the risks and ignored them, you were asking for this', to trying to learn to forgive myself and move forward, taking care of myself better in the future. I want to try and use this experience as a way to grow as a person. Not sure if I can, but I'm going to try.

Offline TexasDragon

  • Member
  • Posts: 92
Re: Online peer support groups?
« Reply #9 on: January 02, 2019, 03:31:10 pm »
Pozguy35 -

Toxic shame can be thought of like a wake or a wave behind a boat. If the boat stops moving forward, it runs the risk of being swallowed up.

Keep moving forward.

And remember that being human requires practice, not perfection.
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

Offline pozguy35

  • Member
  • Posts: 7
Re: Online peer support groups?
« Reply #10 on: January 02, 2019, 03:37:40 pm »
Thanks, TexasDragon. I got to keep moving forward through this. I must remember I'm taking the steps necessary to begin my treatment and eventually be undetectable. I'm comforted by your advice and sincerely thank you, and everyone who has taken some time to reach out to me in these hard times. I'm not alone in this. I can get through this. I need to start believe that I can.

Offline DrewEm

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  • Posts: 73
Re: Online peer support groups?
« Reply #11 on: January 06, 2019, 03:14:44 am »
I've shared my story a few times but you might gain some insight from it. I was never a very sexually active person so the thought I might be positive was a far-fetched idea to me. I was taken to the emergency room with two detaching retinas one day by my employer. While in triage I was asked to sign a permission form to perform an HIV test. I signed off and the blood samples were taken. A few hours later, after being taken to a private room, a team of physicians assembled and gave me my diagnosis - I had a CD of less than ten and a viral load off the charts. I did lose the vision in one eye but within 10 months of my emergency room visit, and HAART, I was and continue to be undetectable.
« Last Edit: January 06, 2019, 03:17:07 am by DrewEm »

 


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