Living with HIV... When does life become normal again?

[VersatileBreeder]

It has been about a month and a half since I found out I am HIV+. It was very rocky and hard to accept in the beginning, but I got past that acceptance part of it. I have had a lot of support from BBRT members in the beginning and it was a great help. I have been seeing an ID specialist and will be getting on meds very soon, once I get all the stuff for ADAP together.

What I am wondering, and I hope some poz guys on here can share their experiences, is at what point after finding out you are poz does life go back to normal? Now, when I say normal, what I mean is being able to live your life comfortably in your own skin as you had before you were poz. I know that life is changed forever when you find out you are poz and that it is a big game changer. However, I am thankful for the fact that the new medications will likely let me live a long, healthy life and that this is not a death sentence like it used to be.

I have been able to accept that I am poz. I am not in denial about it. What I haven't been able to get past are the feelings of self-blame (I am constantly beating myself up for "letting" myself get HIV), hopelessness (I feel like my future is ruined and I won't be able to achieve my goals in life) and overall sadness. No matter what I am doing or thinking about during the day, the HIV thoughts just keep jumping in on me. I feel like the "old me" is gone. The "old me" used to be upbeat and I used to get excited about the things I love in life (traveling, being amongst friends/family, music, sports, etc). The "new me" is just a guy who is trying to function and make it through each day in this new life with HIV, just going through the motions. I guess that pretty much equals depression. As much as I try to tell myself that everything is going to be OK and I am going to live a long healthy life, I always counter it with feelings that I failed myself and ruined my life anyway, so what's the point?

I know I am not the only one to go through this, however, it seems to me that there are many guys who have been able to get their life back. What I am curious to know from other guys' experiences are- when did those negative feelings lift off of you and go away? When did you get the "old you" back? At what point did this new life that you thought was going to be dreadful turn out to just be regular old life, but plus one or two extra pills a day and an extra four doctor visits a year? When did constant thoughts of HIV stop haunting you and you were able to make it through the day without having to think about it?

[nekofox]

I'm not POZ myself, but I just met up with a new friend who is and is now undetectable. The main thing that made me happy to hear from him is that he does have a bio-hazard tattoo on his ankle, but it also has a date that he himself calls his "survival date". You see, he's a gay navy officer and instead of going through the motions of angst and the "could've/would've/should've" he just goes like normal, treating it as if it's a part of him, regardless of how it happened and all.

Really, the best you can do is just treat it as if it's a part of you now and do your best to not over think the whole situation. It's always going to be rough with sudden changes, so there's no escape from that, but the main thing you can face now is what's probably a new lease on life that you can do on your own terms, instead of having to be shackled to so many things that more than likely, subconsciously, made you unhappy.

I wish I could say some more to try and help, but that's at least a start and definitely wish you the best for it all.

[Walkerth139]

Once you become undetectable things will start to settle down. Doctor visits thin out, blood work twice a year and a yearly visit is all it takes some people. Although you have to keep an eye out for unexpected health issues. Once you stop blaming yourself your attitude will improve. Blame doesn't help and could be what is leading to the depression. I recommend some sort of exercise, a work out at a gym and you will help your body and mind. You will be able to date and have sex, but you will dred the status discussion. BBRT is an easy way to meet people because most are POZ. I guess what I'm tiring to say is that your life is altered because of your health but your attitude will affect how well you are able to cope and deal with the issues that this disease presents. Best of luck to you, your life isn't over it's just a little more complicated than it was before.

[seaguy]

Therapy with a psychologist or counselor of some type is helpful too. Often they are able to help with complex issues and they have training that will give you help you can't get on the internet.

[fillmyholeftl]

The reality is that it takes a little time. I think most guys go through that transition period, I know I did. Therapy helped me (it does with a lot of things)...Also support groups.

I've heard that being diagnosed for some is like PTSD.... Don't let HIV define you anymore than being GAY does. That was an adjustment for some, when they admitted that.

We can talk when i'm in town next month.

:-)

[NYCBearpig]

It has never gotten back to "normal" for me. When things start to settle down something else rears its ugly head and that is HIV related, even though I'm undetectable with a good t cell count.

This time its something HPV related that reared its ugly head from 35 years ago, and before that it was skin related psoriasis. Add those to the belly fat that is med related and that won't go away and that no doctor that I found is willing to perform lypo on this type of belly fat and you can see why I can't relate to people who "want" HIV and/or who take no meds.

Oh, and my asthma came back after being dormant for about 40 years.

Plus, the first indication that I had HIV was when I came down with shingles, and eight years later I still have nerve damage from that.

I did not "let myself" get pozzed. The only thing I can come up with is via oral and my lousy gum disease, but if someone ever did tell me that they stealthed me I would immediately ask why he thought he could tell me that and expect to live to see another day.

I *am* originally from The Bronx, NYC, after all.

[bearbandit]

An impossible question as we're all different. I'm a member of the UK's original Long Term Survivors' Group whenere all you had to do was present a letter from your consultant that you' were diagnoses five or more years ago. What's 5 years these days? In 92 it was a hell of a lot - I think two or three of us survive from those days. I personally would lkike to see a Methusalah group, even though I don't come from the Judeo/Christian tradition and we have had some some very useful meeting as part of a NLTSG weekend.

We've also started running "newly diagnosed" weekends whose time limits are less constrained: just when you're ready for them. It can be a month or or two it can be a couple of years. If I were more sure of my facilitation skills and hadn't had such an appalling couple of years I'd be involved in helping out with these as well. It all sounds very "touchy-feely" but that's not the way it comes across. I suggest such a weekend in your area if there's one available: a hell of of a lot of guys get through it all without, but equally a hell of of a lot of guys get through it because of it. Basically, what I'm saying is take support where you can find it. Not the "I feel your pain <hug, sob>" but building up real relationships with real people, who ARE going to answer the phone at midnight.

When I walked through the poz/neg door, you were lucky to get another five years. What's the point of bitching about twenty odd extra years? Things change and we're going to see things change further. I'll probably be dead of a heart attack or a cancer before my immune system gets low enough again for HIV to be implicated in my death. Which isn't to say I'm not going kicking and screaming (though nice and quietly in my sleep might be a plus!). I expect to live to see a functional cure (men in my family tend to be be short lived), I hope to see a total cure.

Find a suitable support group (it might be round the corner, it might be across town - up to you) and attend regularly. You'll start learning how to deal with HIV and eventually learn to support other guys who are newly diagnosed...

[TigerMilner]

It is actually a grieving process. It takes time. I think for me it happened in phases. It is probably still going on. I no longer think about it all the time. One of the most important moments that lead to acceptance for me, was when I actually asked myself "would I do it over again?" I could not be a victim when I knew the honest answer was "yes". I can't say it was worth it, but I do know I would do again. Just keep an attitude that everything happens for a reason. Maybe you can't or won't have certain experiences now that you are poz, but you will also be opened up to new people and experiences that you would not have if you were not positive.

[bearbandit]

Couldn't agree with you more more Tiger, even though decades separate our diagnoses. Plus you've taken everything I meant to say and said it better. ;-)

All I can say is to repeat myself: find a support group and learn to open up. You don't say where you are: if you don't have a support group in easy reach, I'm happy to talk via personal message. Hell, in a tiny little country like Wales we only have a couple of support groups...

Steve

[VersatileBreeder]

Thanks nekofox. That is what I am hoping for, to be like your friend who can just treat it as its a part of me, not something that defines me. I am trying not to overthink it, but unfortunately my true thoughts and feelings override the thoughts and feelings I try and want to instill in my head.

I'm not POZ myself, but I just met up with a new friend who is and is now undetectable. The main thing that made me happy to hear from him is that he does have a bio-hazard tattoo on his ankle, but it also has a date that he himself calls his "survival date". You see, he's a gay navy officer and instead of going through the motions of angst and the "could've/would've/should've" he just goes like normal, treating it as if it's a part of him, regardless of how it happened and all.

Really, the best you can do is just treat it as if it's a part of you now and do your best to not over think the whole situation. It's always going to be rough with sudden changes, so there's no escape from that, but the main thing you can face now is what's probably a new lease on life that you can do on your own terms, instead of having to be shackled to so many things that more than likely, subconsciously, made you unhappy.

I wish I could say some more to try and help, but that's at least a start and definitely wish you the best for it all.

[VersatileBreeder]

Thanks Walterth139. I am looking forward to being undetectable because at least then, I can feel secure that the virus is being neutralized and under control of the medication. I hope things really do settle down after that. It has been a scary thought, however, to have to know that my health is basically reliant upon a pill that I have to take EVERY day for the REST of my life. Once I get a routine down with the meds, though, I plan to get a rigorous workout routine going and I want to get in and stay in the best shape of my life. I keep telling myself that my life isn't over and that I will live a long, healthy life. The uncertain part of that is how healthy I will be mentally throughout it because of this.

Once you become undetectable things will start to settle down. Doctor visits thin out, blood work twice a year and a yearly visit is all it takes some people. Although you have to keep an eye out for unexpected health issues. Once you stop blaming yourself your attitude will improve. Blame doesn't help and could be what is leading to the depression. I recommend some sort of exercise, a work out at a gym and you will help your body and mind. You will be able to date and have sex, but you will dred the status discussion. BBRT is an easy way to meet people because most are POZ. I guess what I'm tiring to say is that your life is altered because of your health but your attitude will affect how well you are able to cope and deal with the issues that this disease presents. Best of luck to you, your life isn't over it's just a little more complicated than it was before.

[VersatileBreeder]

seaguy, therapy has been something I have been heavily considering even before I found out I was poz (for other life issues). Since I found out I am poz, therapy seems like a must at this point. I am wondering if there are any psychologists or therapists that specialize in helping people with major life issues like finding out they are HIV+.

Therapy with a psychologist or counselor of some type is helpful too. Often they are able to help with complex issues and they have training that will give you help you can't get on the internet.

[VersatileBreeder]

Hey bud, this has definitely been quite a transition period and I just want it to be over. Therapy and support groups have been high on my list of things to do and once I get on meds, I am going to actively seek it out. It sure as hell feels like post traumatic stress disorder at this point. I keep thinking back to the day I found out- it replays in my head like a bad dream. I am trying not to let this define me, but it is a hurdle I need to get over.

I am definitely looking forward to meeting up when you're in the area next month. PM me with the dates you're going to be around. Thanks!

The reality is that it takes a little time. I think most guys go through that transition period, I know I did. Therapy helped me (it does with a lot of things)...Also support groups.

I've heard that being diagnosed for some is like PTSD.... Don't let HIV define you anymore than being GAY does. That was an adjustment for some, when they admitted that.

We can talk when i'm in town next month.

:-)

[VersatileBreeder]

NYCBearpig, I'm sorry to hear life hasn't gone back to normal for you. It sounds like you have been able to stay strong through it all and all of the things you mentioned- psoriasis, HPV related issue, etc are all annoying, but at least they are not life threatening. My doctor keeps assuring me, "you're going to be fine," and I hope he is right. I have a few poz friends who have been on meds and undetectable for quite a while and they have all been healthy as ever, so I am hoping to achieve that same level of health.

And yeah, if anyone ever told you that they stealthed you, they would definitely be due for a good old Bronx beatdown. Also originally from the Bronx here

It has never gotten back to "normal" for me. When things start to settle down something else rears its ugly head and that is HIV related, even though I'm undetectable with a good t cell count.

This time its something HPV related that reared its ugly head from 35 years ago, and before that it was skin related psoriasis. Add those to the belly fat that is med related and that won't go away and that no doctor that I found is willing to perform lypo on this type of belly fat and you can see why I can't relate to people who "want" HIV and/or who take no meds.

Oh, and my asthma came back after being dormant for about 40 years.

Plus, the first indication that I had HIV was when I came down with shingles, and eight years later I still have nerve damage from that.

I did not "let myself" get pozzed. The only thing I can come up with is via oral and my lousy gum disease, but if someone ever did tell me that they stealthed me I would immediately ask why he thought he could tell me that and expect to live to see another day.

I *am* originally from The Bronx, NYC, after all.

[VersatileBreeder]

bearbandit, as always, you provide some great insight and ideas. I know we are all different in how we cope with major life changes like this. There are some people who can recover mentally very quickly from finding out they are HIV+, whereas there are others who may never recover. I just hope I am not part of the latter in that respect.

There is a non-profit group near where I live called NJ Buddies- they are a support network for HIV+ people. Every Monday night, there is a support group specifically for gay men, and on Wednesdays, there is a more generalized support group for men and women. I am not sure which one I would go to just yet. I have never been to a support group before and I am a little nervous about going, though I am certain I will feel fine once I go there once or twice. I am sure it will be beneficial for me also in the end.

I still have not told any friends or family about my HIV status and I don't intend to (at least not anytime soon). My doctor also recommended me to "keep it to myself" if I am not comfortable disclosing it to those who are not on a need to know basis. The only release and venting area I have had is this website and these forums. And I am not trying to impugn this site by any means, it has been great to have a place to let it all out, even if it is the internet, and you guys have all been great. I just think it would be good for me and very healthy to get it out in person.

Later down the road, once I have gotten a handle on this for myself, I hope I can give back and help guys who fall into the same situation I am in now.

An impossible question as we're all different. I'm a member of the UK's original Long Term Survivors' Group whenere all you had to do was present a letter from your consultant that you' were diagnoses five or more years ago. What's 5 years these days? In 92 it was a hell of a lot - I think two or three of us survive from those days. I personally would lkike to see a Methusalah group, even though I don't come from the Judeo/Christian tradition and we have had some some very useful meeting as part of a NLTSG weekend.

We've also started running "newly diagnosed" weekends whose time limits are less constrained: just when you're ready for them. It can be a month or or two it can be a couple of years. If I were more sure of my facilitation skills and hadn't had such an appalling couple of years I'd be involved in helping out with these as well. It all sounds very "touchy-feely" but that's not the way it comes across. I suggest such a weekend in your area if there's one available: a hell of of a lot of guys get through it all without, but equally a hell of of a lot of guys get through it because of it. Basically, what I'm saying is take support where you can find it. Not the "I feel your pain <hug, sob>" but building up real relationships with real people, who ARE going to answer the phone at midnight.

When I walked through the poz/neg door, you were lucky to get another five years. What's the point of bitching about twenty odd extra years? Things change and we're going to see things change further. I'll probably be dead of a heart attack or a cancer before my immune system gets low enough again for HIV to be implicated in my death. Which isn't to say I'm not going kicking and screaming (though nice and quietly in my sleep might be a plus!). I expect to live to see a functional cure (men in my family tend to be be short lived), I hope to see a total cure.

Find a suitable support group (it might be round the corner, it might be across town - up to you) and attend regularly. You'll start learning how to deal with HIV and eventually learn to support other guys who are newly diagnosed...