I... can't believe I'm here...

[Jtz]

Hi Everyone, I hope the title of my post is not offensive but I really just am a little in shock still that I am here. I keep wishing that this is just a long, nightmare that I will wake up from. I came back HIV positive on Jan. 28th. I was actually away in a psychotherapy intensive one week program to try to come to peace with things like my childhood sexual abuse trauma and accepting myself. Part of the reason for me going to this program is that I was engaging in some very risky and stupid unsafe sexual behaviors, so this should not be as much of a shock to me but I thought I was taking just enough precautions to get me by safe. Anyways, I had made some great progress on my issues during the week and the day before the program ended I got my lab results back and got this bombshell. I felt like my world ended. Not so much because I thought I was going to die (because everyone keeps telling me about how long people nowadays live with this disease), but because of how scary it sounds to actually LIVE with this. I already had trouble in relationships and dating, now this just adds an unforeseeable complexity to it. Having to live hiding something from my family and friends. I have already told a family member and I plan on telling just perhaps 2 more people, but then to have to hide this from everyone else. I hate hiding things, but I know the stigmas around this and what this could mean for my relationships, so I think I will want to be selective with who I tell (except any sexual partners of course).

Anyways, one thing I learned in this intensive program is the importance of having a support group and I think I need that more than ever now. I came across this forum which sadly nobody wants to be a part of but are glad that it exists. Any advice or words of encouragement are greatly welcomed right now. Also, if there are any other active online support groups that anyone can suggest I would also greatly appreciate it.

Thank you.

[Jtz]

Oh I forgot to mention, I did go to the Doctor on 02/01 and they put me on Biktarvy. As of right now I have just been feeling itchy around my body, but I have actually been feeling itchy like this for about the past month or so. 2 weeks prior to getting the positive result I had developed like a rash and hives throughout my body, I thought it was because of a drastic change to very cold whether from where I live since I was on a trip. Did anyone experience rashes, hives or itchiness as symptoms of HIV? Or as side effects of Biktarvy or their ARV medication?

[Jim Allen]

Hiya

Welcome to the forum, sorry to hear about the diagnosis though.
Being newly diagnosed can be a lot to digest and a journey and, we're here to support you.

Sorry to hear about the itchiness and the rash. Did you have a low CD4 count? Best follow-up with a doctor as it could be everything or nothing and they will need to have a look to treat it. Could be just a fungal infection that requires treatment.

Glad to hear that you started HIV treatment, can take some time to adjust to it. Did they run confirmation testing and follow-up labs like CD4/Viral load when starting treatment?

I felt like my world ended. Not so much because I thought I was going to die (because everyone keeps telling me about how long people nowadays live with this disease), but because of how scary it sounds to actually LIVE with this. I already had trouble in relationships and dating, now this just adds an unforeseeable complexity to it. Having to live hiding something from my family and friends. I have already told a family member and I plan on telling just perhaps 2 more people, but then to have to hide this from everyone else. I hate hiding things, but I know the stigmas around this and what this could mean for my relationships, so I think I will want to be selective with who I tell (except any sexual partners of course).

I'm not sure I would consider living with HIV as hiding things. 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.

My situation is everyone knows I'm living with HIV, it hasn't complicated my dating life though. However, just keep in mind once you start sharing your HIV status with people it's out there and it's outside your control who people talk to.

Anyhow, welcome and hope you find some support from the forum. For the moment, I am going to ask you to only post in this one thread and, you can ask questions and get replies from members in this thread.

Best, Jim

[Jtz]

Thanks a lot Jim. They did do some blood work on me to check for CD4 count/ viral load but I’m supposed to meet back with the Doctor on those in 3 weeks. He said I could start the medication in the meantime however, so I thought it was best that I did. I’ll probably update here when that comes back. I appreciate your information and your heavy involvement in this forum. It’s really comforting to get information and have people like you to help people newly diagnosed with this cope. Thanks a lot.

[TexasDragon]

Hello JTZ -

More than a few folks on here share our troubled past. Like you I was sexually abused as a child. I took risks as well - it was almost like an out of body experience, like watching a movie. It was the best drug ever to cope. But it all cam crashing down with that call in November 2018. ‘Can you come in? We need to talk.’ - I knew right away. She was super sweet and didn’t say I was positive, just kept saying I would be fine and we needed to talk.

Like you I am on Biktarvy. I have had only a minor problem of elevated bilirubin - medically insignificant. I am happy, healthy, and in great shape. I still struggle with the abuse though. That won’t ever be ok I don’t think.

You will adjust. Give yourself time. Be gentle. Get a plan. Stick to the plan. And you will lead a happy, healthy life.

You are not alone. And we care.

[Jtz]

Thanks TexasDragon,

I’m sorry to hear you were also a victim of sexual abuse. I’m usually pretty optimistic but right now it just feels like we don’t ever catch a break do we?... Thanks for the advice, I guess it’s all matter of time now. I wake up in the middle of the night and first thing in the morning and this is what is on my mind, and throughout the day as I try to work, it’s just there... standing over me. I really hope that goes away.

On a separate note, I don’t know if you already have but I would suggest seeking out some psychotherapy for your sexual abuse. I’ve been going to therapy for a couple years now and I’ve come a pretty long way. I hope you can find some peace in that aspect of your life.

Thank you.

[TexasDragon]

JTZ -

Thanks my friend. You know it really helps just knowing I’m not alone in that either. I have done therapy and it has helped - but it’s always there. I can smell a cologne on the street sometimes and poof - I’m 9 years old again.

One book that really helped if you have not read it was ‘Abused Boys: The Neglected Victims of Childhood Sexual Abuse.’

As far as HIV, it takes time to absorb and settle into a routine. For the first few months it was all I thought about. Now I don’t think about it much anymore - I have a reminder on my phone to take my pill at 7 every morning and I do. That simple. It’s only when I have to refill / renew my Rx or have a follow-up appointment that I really think about it anymore.

[Jtz]

Yea man, you are definitely not alone in that either. I’ve never read that book but I’ll definitely check it out, thanks for sharing. And I definitely hope it comes down to that for me one day. Also if you ever need to talk to someone about living with the abuse or this or whatever, let me know. Finding others that can relate to our struggles can be very beneficial I am finding.

Thanks.

[TGun]

been thorugh all this myself,, as of june 2017,  to awhile, but now things are better than ever for me.  this virus has made me look at life in a diffrent manner that has brought focus, direction and clarity like never before.  im positive and know my direction now.  i could go on and on, but i want you to know it took awhile to get here. be patient with yourself.  your gonna be down for awhile, but you will bounce back better than ever.. im sure im not the only one on here that would agree with what i jsut said... hang in there. trust me

[TexasDragon]

JTZ -

Honestly, living with HIV has been easier than living with myself. I have struggled with my sexuality and the reconciliation of sexual abuse and relationships. People start getting emotionally close - I run.

With the tremendous work done regarding modern medicines, we are lucky to take one pill a day and lead a relatively normal life with HIV.

The other problems - not so much. No one pill a day answers to those deeper emotional issues.

Head up. Keep looking forward.

[Jtz]

TGun,

Thanks for that, I think that’s what I really need to hear right now. I am very happy that this is where you are right now. I hope we all get there.

Thanks.

[Jtz]

TexasDragon,

I can 100% relate to the struggles with sexuality and troubles with building intimate relationships. Those were actually my main reasons for going to this program (of course all rooted from the sexual abuse). I had finally felt confident enough to think that I can get out there and just be myself and love myself and find love, and a day later I get these news. It’s almost as if I’m just not meant to be happy. It’s just obstacles on top of obstacles. Anyways, I guess what I am trying to say is, you are not alone, I can totally relate and I think I was actually getting somewhere with accepting myself and coming to terms with the abuse, so it is probably possible.

For me the scariest thing right now is, as part of growing up ashamed and feeling inadequate because of the abuse I always had a hard time dating. Here I was ready to go for it, and now this. This just adds an enormous amount of complexity into the mix for me that I was not ready for. It was hard for me being neg, now imagine pos. I don’t know man,  it just feels like I’m just not supposed to be happy.

[TexasDragon]

JTZ -

For me, the struggle was / is with toxic shame.

“Shame typically comes up when you look inward with a critical eye and evaluate yourself harshly, often for things you have little control over.

This negative self-evaluation often has its roots in messages you’ve received from others, especially during your childhood. When parents or teachers criticized you, rather than any poor behavior choices you may have made, they planted the seed of shame.

Shame centers on your very identity as a person, and it becomes particularly toxic when it starts to impact your sense of self.

Toxic shame opens the door to anger, self-disgust, and other less-than-desirable feelings. It can make you feel small and worthless. It can trickle into your inner dialogue like a poison, locking you into a painful loop of negative self-talk.

When toxic shame lingers without resolution, the desire to hide from it or escape from yourself can lead to potentially harmful behaviors like substance misuse or self-harm.”

[Jtz]

TexasDragon,

I hear you man. Yea shame is honestly the root of it all for us. It is what made me feel like an inadequate man growing up and probably what caused me to be out there acting out and doing stupid shit that led me here. Not sure how much this may mean coming from me right now but I hope you find that there is nothing to be ashamed about, and whatever shame you may feel I’m sure is the ultimate consequences of your abuse and other things that you may have gone through in life. But you are a survivor and that’s nothing to be ashamed about and also believe me you are not the only one that has gone through things like these, you are not alone and there are many others like us out there. Many that perhaps have never even had the courage to bring it up on a forum and much less in real life. Anyways, hope that helps you be easier on yourself in that aspect of you.

[TexasDragon]

JTZ -

Hugs my friend. Just hugs.

[randym431]

I've been pos since 2005. I thought I had cancer with the weight loss from 195 down to 138, and a CD4 of only 83. However, I had no real medical issues, no obvious issues other than skin and toenail issues. And truth be told, I was SOOOO RELIEVED when I found it was HIV and NOT cancer. For me, ignorance was bliss. When I found out in 2005 that I was pos, I told my parents that I would be just fine and all I needed to do was take two pills every day and go on with my life. Well, it actually turned out that way. I became undetectable fairly fast, began regaining my weight fairly fast, the side effects from the meds went away after a week, and it took a while but my skin/nail issues also went away. And so, it's been pretty much a normal life for me for the past 15 years. I look like anyone else in the crowd, and now I have weight issues again but with having too much weight rather than not enough weight. I need to lose 40 #'s. I started with the HIV med Sustiva and Epxicon, then truvada, and then Atripla, then on to Biktarvy, and recently switched to Dovato. My family has known for years that I am HIV and on meds but they don't care or treat me any differently. In fact, they all call me the healthiest member of the family. Don't take HIV too personally because everyone has something that they must put up with in life. My brother in law has diabetes and lost a foot to diabetes and has a hard time dealing with his diabetes, but at least I haven't lost a foot to HIV or anything as bad. I'd suggest to keep your chin up, forget about the stigma because who is anyone to give you the feeling of stigma. There are things worse than HIV, and the magic formula to living with HIV is "adherence" to the med(s). Adherence is always number one. And after that, just take it a day at a time. Try to eat healthy, CD4 recovery and appearance recovery may take months or possibly a year or two, so don't get stressed and do not dwell on it. The meds do work extremely well, some meds may need to be switched out from time to time, but keep the world in perspective if that makes any sense. After 15 years I never think about HIV frankly, I do remember to take my one pill a day and every day, and I go about my life loving my dogs, shopping, messing on the old computer, mowing the yard in the Summer time and shoveling the damn snow in the Winter time. You may want to check out any HIV helpful programs in your area like ADAP and HIV support groups. Many support groups have free cooking classes and other help like assigning you a case manager. Support groups are a great place to meet others, exchange ideas and information, learn new information, and maybe how to cook a great stir-fry. Just relax and plan your future as if you never became HIV pos.