Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 16, 2014, 09:31:35 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 638912
  • Total Topics: 48503
  • Online Today: 190
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Didn't realize how having HIV affected me  (Read 5869 times)

0 Members and 1 Guest are viewing this topic.

Offline wow1969

  • Member
  • Posts: 208
Didn't realize how having HIV affected me
« on: April 04, 2013, 04:06:34 PM »
I was diagnosed in 2008 and infectedby my ex. We broke up in 2007. He admitted to lying about things to me. In September he died from HIV complications.

Recently I figured out that I have all these fears about being poz. I seem to have developed depression and anxiety (on meds now and seeing a therapist) and have trouble dealing with stress.

I'm hoping that no one decides to launch an attack against me for what I"m about to write.

Honestly, I didn't realize it but I've been paralyzed since finding out. Intellectually I've been able to understand this and make sense of it but emotionally it's been a different story.

The fear kept me in an abusive relationship for 4 years because I was/am convinced I'm now damaged goods.

The fear of dying/unemployed/broke kept me in a job I hate which has done nothing but bring misery to my life.

The belief that I'm damaged has led me to become isolated.

The isolation has started it's own batch of fears ... What if I die? Get hurt? etc ...

I can't shake the feeling/thought that I now have this ticking time bomb inside of me ... Why try anything because my future is very limited.

As much as I hate to admit this, becoming poz literally changed the way I see myself.

People can say all day long that it's just a virus and not a judgement and my mind understands and agrees with that. But emotionally I feel so different now. I think I've become scared to live.

I finally got to the point where I can't take being sad/depressed/miserable anylonger. I want to be happy again. Hopefully I'm working toward that but how do I shake these fears and beliefs?


Offline darryaz

  • Member
  • Posts: 450
Re: Didn't realize how having HIV affected me
« Reply #1 on: April 04, 2013, 04:09:07 PM »
Well my dear, recognizing the problem is the first step to conquering it!!!!   :)

Offline mitch777

  • Member
  • Posts: 3,520
Re: Didn't realize how having HIV affected me
« Reply #2 on: April 04, 2013, 06:00:52 PM »
I was diagnosed in 2008 and infectedby my ex. We broke up in 2007. He admitted to lying about things to me. In September he died from HIV complications.

Recently I figured out that I have all these fears about being poz. I seem to have developed depression and anxiety (on meds now and seeing a therapist) and have trouble dealing with stress.

I'm hoping that no one decides to launch an attack against me for what I"m about to write.

Honestly, I didn't realize it but I've been paralyzed since finding out. Intellectually I've been able to understand this and make sense of it but emotionally it's been a different story.

The fear kept me in an abusive relationship for 4 years because I was/am convinced I'm now damaged goods.

The fear of dying/unemployed/broke kept me in a job I hate which has done nothing but bring misery to my life.

The belief that I'm damaged has led me to become isolated.

The isolation has started it's own batch of fears ... What if I die? Get hurt? etc ...

I can't shake the feeling/thought that I now have this ticking time bomb inside of me ... Why try anything because my future is very limited.

As much as I hate to admit this, becoming poz literally changed the way I see myself.

People can say all day long that it's just a virus and not a judgement and my mind understands and agrees with that. But emotionally I feel so different now. I think I've become scared to live.

I finally got to the point where I can't take being sad/depressed/miserable anylonger. I want to be happy again. Hopefully I'm working toward that but how do I shake these fears and beliefs?

Wow,

thanks for your honesty!

no launch of an attack will be coming your way from me (and doubtfully anyone else here).

Are you still in an abusive relationship?
If so, that would be the first thing I would deal with.

If that is over and done with, I would suggest looking for a job that doesn't add stress to your life in a negative way.
I know it seems as though I am suggesting the obvious but making changes in these 2 key areas of your life will help with a better outlook.

I thought I would be dead from hiv when I was much younger and still went forward with what I thought would make ME happy.
If you focus in on what you enjoy in life the fear doesn't have room any longer.

I know.....
easy-peezy. ::)

Just try to take a step forward in the things that put you in a better emotional place.

I am not a wizard but I understand your fears.
Change what you can in your life and realize that this ugly little virus does not control you. :)

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline buginme2

  • Member
  • Posts: 2,922
Re: Didn't realize how having HIV affected me
« Reply #3 on: April 04, 2013, 07:01:33 PM »
While everyone's specific circumstances may be different I can assure you, you are not alone.

Talking helps.  It's good to hear your seeing a therapist.  Keep going, sometimes it can take awhile to move past that dialog in our heads that often times is self destructive and limiting.

anyone who would say that they don't get scared Is lying.  I have felt some of the things you have said, I think we all have.  It's good to talk about it.

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #4 on: April 04, 2013, 07:28:10 PM »

Are you still in an abusive relationship?
If so, that would be the first thing I would deal with.

If that is over and done with, I would suggest looking for a job that doesn't add stress to your life in a negative way.
I know it seems as though I am suggesting the obvious but making changes in these 2 key areas of your life will help with a better outlook.

I thought I would be dead from hiv when I was much younger and still went forward with what I thought would make ME happy.
If you focus in on what you enjoy in life the fear doesn't have room any longer.



Thanks ... Yes it's obvious but I didn't see it for a long long time ... Sometimes we miss the obvious .. 

Yes been out of it for 19 months ...

Working on the job situation ...

I agree ... I started challenging this mindset a few weeks ago when a friend said I had alot of internal stigmitization about being poz ... I agreed with him quickly .. Over the next few days I realized he was right ... Emotionally I've never come to terms with this ...

Finally I realized that all I want is to be happy ... And that is where I'm starting from ...

But figuring out how to change the emotional side of how I react to being poz has been really difficult ... The logical side gets it ... but my emotions, those things are still running scared ...


anyone who would say that they don't get scared Is lying.  I have felt some of the things you have said, I think we all have.  It's good to talk about it.

thank you for this ... i've had too many say they were never bothered by becoming poz ... so few will admit that it's scary at time ...

When I found out I was poz I had four days to process and then life took over again and hasn't really stopped until the last year .... Never really had time to get the emotions worked out regarding this and it seems now that those emotions are demanding attention ...
« Last Edit: April 04, 2013, 07:39:12 PM by wow1969 »

Online mecch

  • Member
  • Posts: 11,650
  • red pill? or blue pill?
Re: Didn't realize how having HIV affected me
« Reply #5 on: April 04, 2013, 08:10:15 PM »

The fear of dying/unemployed/broke kept me in a job I hate which has done nothing but bring misery to my life.


Try to deal with stuff piecemeal?  Lumping it all together could be overwhelming. I understand that you see a lot of the challenges and griefs you mention as being because of the diagnosis and living with HIV. 

But this one I selected above doesn't seem so related...  I think most of us have fears of unemployment and/or being broke.  (At least I do, too. Its in my bones, maybe growing up American...)  Working to make ends meet - sometimes I loved my jobs sometimes they have sucked and this was from the age of 18!!!  Fear of poverty.   Its a sucky anxiety but not really about being HIV+, is it??  I mean, not principally?   

Sure you have to find ways out of all this stuff.  But look at each thing as one problem, each one might be more manageable...   

And maybe some of this doesn't have much to do with HIV but more who you are, your coping mechanisms, etc,, and how you have lived for years.....


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #6 on: April 04, 2013, 09:45:20 PM »
Mecch ... thanks for the response

Unemployed/broke is that I won't be able to afford my medications ... I have stayed in the job, I realize now, because I"ve been so terrified of not having insurance that staying was the only way I saw to stay alive ... Sort of like tunnel vision ... I'm now seeing I have other options but it was the fear associated with HIV that held me to the job ... Up until recently the fear of not having insurance outweighed the misery of the job which is truly saying something ... However, due to stress my body has started fighting back and I can no longer ignore this


Breaking it down into smaller clumps is what my therapist and I are working on ... I honestly thought that if I could get logical about having HIV I would be fine emotionally ... Seems that didn't work out like I'd planned ... In fact, the more logical I became, the more I suppressed my feelings about having HIV ...


Coping mechanisms are definitely something I'm having to figure out ... I"m not always good with emotions so I thought I'd try here for suggestions in dealing with the fears (which seems to have become paralyzing over time) and anxiety ...


How do we confront those fears?
How do we make peace with having HIV?
How do we feel good about ourselves again?
I honestly feel like damaged goods. How does that go away? Can it?
I doubt I will ever see a time when I"m thankful for having this. How do people deal with that? I can't be the only one.


Offline buginme2

  • Member
  • Posts: 2,922
Re: Didn't realize how having HIV affected me
« Reply #7 on: April 04, 2013, 11:12:34 PM »
I know I said this already but, you are not alone in this.  I've felt some very similar things that you have and I'm sure others have too.

You mentioned how people say "it's just a virus."  That is something that gets me too.  It's the whole "HIV is no big deal" that gets tossed around.  I hate that.

The insurance thing is an issue for me too.  I have good insurance through my employer.  Actually it's very good insurance that I am lucky to have.  However, I have these little moments of panic like what if I lose my job? What if I get sick and can't work and therefore lose my insurance?  It's also made me less likely to look for a different job.  I do ok but, I feel like I have to settle for my current job because of the insurance.  It's a crappy thing.




How do we confront those fears?
How do we make peace with having HIV?
How do we feel good about ourselves again?
I honestly feel like damaged goods. How does that go away? Can it?
I doubt I will ever see a time when I"m thankful for having this. How do people deal with that? I can't be the only one.



These are good questions.  I'm not about to tell you what the answers are because we are all on our own journey and the answers can be different for all of us.  However, I will say your question about "when will you be thankful for having this?"  What do you mean by that?  Why would you be thankful for having HIV? 

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #8 on: April 05, 2013, 12:44:31 AM »

These are good questions.  I'm not about to tell you what the answers are because we are all on our own journey and the answers can be different for all of us.  However, I will say your question about "when will you be thankful for having this?"  What do you mean by that?  Why would you be thankful for having HIV?

Thank you ... The parts about insurance hit the nail on the head ... That's basically the fear ...

What I wrote was "I doubt I will ever see a time when I"m thankful for having this. How do people deal with that? I can't be the only one"

Meaning, it's not something to be thankful for or glad to have ... It's permenant .. It's life changing ... It's 24/7 ... How do people deal with that? How do people feel about that? ... The mental energy used to keep up the fight can wear a person down ...

So how do we deal with the permenance of this? The fact that it's not going to be a happy thing. We aren't going to be thankful for it.

We may learn to tolerate, co-exist, understand, live with HIV ... But I doubt it's ever going to be something to be happy about ...


Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Didn't realize how having HIV affected me
« Reply #9 on: April 05, 2013, 02:25:29 AM »
I will have been diagnosed with HIV for twenty years this month. I'm not happy about it. I've certainly learned a lot along the way, and survived when I really shouldn't have. I am grateful for those things, even if from time to time I feel like a ghost in this world.

Access to meds will keep you alive and healthy, as you know. Leaving a job you do not like, or have outgrown is a natural part of life. You simply have to take the insurance part into consideration. I like your therapist's idea about breaking things down into smaller chunks. It's easy to just freeze when the whole picture presents itself to you like some gruesome tableau.

I daresay that most if not all of us have been there. And I can only speak for myself, but I have sometimes found myself there again, from time to time - especially when facing a major life event. Changing jobs, dissolving (or entering) a relationship, moving, the loss of a parent or friend or pet - all these things can trigger this cascade effect. Working with your therapist, you will hopefully find tools to cope with these things, with THAT thing.

 I have had the chance to do some good in this world since becoming infected, and I have become someone who seeks out that opportunity. For that growth in character I am grateful. Who says I wouldn't have done just that without HIV? No way to tell in a linear universe. No way to jump multiverse tracks at will and find out how Jonathan 2.5 went/is going about it.

I can say this. I wouldn't mind a little less character and a little less pain. But I'm here now, and so are you. The future is our only real chance, and the present is our opportunity. Maybe in five years there will be a working cure. Maybe we will chug pills every day. For you, that might be a completely normal life span. Hell, for me too even, odds be damned.

It's cold comfort to know you are nowhere near alone, but it's the comfort you get sometimes. I have nothing but good wishes for you during this journey. You already know it's not easy. The trick is to make certain you get your money's worth.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #10 on: April 05, 2013, 11:10:24 AM »
I can say this. I wouldn't mind a little less character and a little less pain. But I'm here now, and so are you. The future is our only real chance, and the present is our opportunity. Maybe in five years there will be a working cure. Maybe we will chug pills every day. For you, that might be a completely normal life span. Hell, for me too even, odds be damned.

It's cold comfort to know you are nowhere near alone, but it's the comfort you get sometimes. I have nothing but good wishes for you during this journey. You already know it's not easy. The trick is to make certain you get your money's worth.

You and me both. I could live with a little less character :-)

Yup, I think that is what I"m finally trying to do ... Get my money's worth

Offline mike88

  • Member
  • Posts: 16
Re: Didn't realize how having HIV affected me
« Reply #11 on: April 05, 2013, 12:33:30 PM »
Thanks for sharing, this had been a very interesting and informative read for me. You are all giving some great advice and I think the more you talk about what's going on in your head the more you will be able to work through this.

Having HIV sucks and you just have get through it the best you can. I think everybody has to find their own way and the best way to do that is ask what the other person is doing try it and if if doesn't work try something else.

My way through it in the beginning was working with a therapist that helped big time and taking on the mind set that my new job was no longer working for someone else but working full time on myself staying healthy, mentally and physically. That's my  full time job everything else comes a distant second.

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #12 on: April 05, 2013, 02:55:44 PM »
Thanks for sharing, this had been a very interesting and informative read for me. You are all giving some great advice and I think the more you talk about what's going on in your head the more you will be able to work through this.

Having HIV sucks and you just have get through it the best you can. I think everybody has to find their own way and the best way to do that is ask what the other person is doing try it and if if doesn't work try something else.

My way through it in the beginning was working with a therapist that helped big time and taking on the mind set that my new job was no longer working for someone else but working full time on myself staying healthy, mentally and physically. That's my  full time job everything else comes a distant second.


Thank you Mike and everyone who has responded and actually said ... YUP IT SUCKS!!!! ... It does and it's good to have that acknowledged ...

I think I'm in a similiar mindset ... I just call it wanting to be happy .. But that means taking care of me ... It's probably the reason I'm currently dealing with the emotions associated with having HIV ... I'm taking care of me and yes, it's a fulltime job :-) Thankfully I like the boss




Offline buginme2

  • Member
  • Posts: 2,922
Re: Didn't realize how having HIV affected me
« Reply #13 on: April 05, 2013, 03:14:05 PM »
Hey I was thinking after I posted last night that I forgot something that is important.

Yes HIV sucks, and its a big deal and has a lot of physical and emotional and even mental baggage that comes along with it.

However, you can live a happy and full life not because of HIV but despite it.  It shouldn't stop you from living the life  that's right for you, obtaining the job you like, the education you strive for and the relationship/s that fulfill you. 

Take the sucky part, acknowledge it, set it aside, and move forward.

Offline mike88

  • Member
  • Posts: 16
Re: Didn't realize how having HIV affected me
« Reply #14 on: April 05, 2013, 03:32:29 PM »
 "I'm taking care of me and yes, it's a fulltime job :-) Thankfully I like the boss"

  Nice, great line, I love it and it sounds like your going to be just fine !

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #15 on: April 05, 2013, 03:44:05 PM »
"I'm taking care of me and yes, it's a fulltime job :-) Thankfully I like the boss"

  Nice, great line, I love it and it sounds like your going to be just fine !

Thanks Bug and Mike ... Yeah .. I'm going to be fine ... That's the reason I'm here asking for this advice is I made up my mind that I"m going to be happy ...

But there is alot of emotional baggage that comes with HIV and I don't think I've dealt with it till now ...

I want to deal with it ... Work through it so that I can have that life I want ... It's just that the emotions are a bit confusing at times ...

I think the hardest part is that there isn't really an end for this ... I'm stuck with it for the rest of my life so it's not like I can look forward to a month from now when I'm better ... There isn't a break so to speak and that makes this illness different many others ... The constancy of it adds a whole new dimension ....


Offline mitch777

  • Member
  • Posts: 3,520
Re: Didn't realize how having HIV affected me
« Reply #16 on: April 05, 2013, 04:04:53 PM »
wow,
while hiv is a life long illness, just remember that there are MANY other life long diseases/illnesses that people have to deal with.
hiv has it's unique requirements but we pozzies are not alone in this regard.

Like I mentioned earlier, this ugly little virus doesn't control you and it most certainly doesn't define who you are.

I have my share of crappy days and it's not always a peaches and cream life but who's life IS perfect?

Many of us here have lived for 20 or 30 years with this bugger. (me 30+ years)
I think I could honestly say to you that my life has been pretty darned happy and full.

Best to you on your journey! :)

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #17 on: April 06, 2013, 06:27:27 PM »
I am never happy about having HIV.  I'm also diabetic and can honestly say that on some days, I'd rather deal with HIV than the diabetes.  It's difficult to learn a whole new way to eat (I wasn't born with the diabetes), and having to watch every little carb, sugar, etc.   I also use Insulin and many have told me they would not be able to give themselves shots.  That doesn't bother me, maybe because I was an IV drug user earlier in life.

I also don't like aging and all that comes with that, having to use thicker wrinkle cream, using Retinol, having my hair go grey and change from being somewhat oily to being really dry.  But, it is what it is and we have to deal with what we have.  I have issues because of the HIV, like neuropathy.  My feet, in particular my toes, feel like they're stuck in a light socket at times, and are having electrical currents pass through.  I have a bone disease called avascular necrosis and need both knees replaced.  I have a lot of pain when walking and cannot stand for over about 15 minutes, and that's leaning on something. I have some lipo from an earlier used med (Crixivan).  I've been taking meds for over 20 years.  And they've improved a lot. 

You always have these people on this forum.  Most of us have been where you are, and though I know no one who likes living with the HIV, a lot of people have come to accept that we have this and need to learn how to live with it, take meds, and just go on.  I have a good family, and great friends.  I have one best friend, and some of the people on this forum have become great personal friends.  That makes a difference.  Good luck, I think you'll be alright.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mitch777

  • Member
  • Posts: 3,520
Re: Didn't realize how having HIV affected me
« Reply #18 on: April 06, 2013, 08:17:06 PM »
I am never happy about having HIV.  I'm also diabetic and can honestly say that on some days, I'd rather deal with HIV than the diabetes.  It's difficult to learn a whole new way to eat (I wasn't born with the diabetes), and having to watch every little carb, sugar, etc.   I also use Insulin and many have told me they would not be able to give themselves shots.  That doesn't bother me, maybe because I was an IV drug user earlier in life.

I also don't like aging and all that comes with that, having to use thicker wrinkle cream, using Retinol, having my hair go grey and change from being somewhat oily to being really dry.  But, it is what it is and we have to deal with what we have.  I have issues because of the HIV, like neuropathy.  My feet, in particular my toes, feel like they're stuck in a light socket at times, and are having electrical currents pass through.  I have a bone disease called avascular necrosis and need both knees replaced.  I have a lot of pain when walking and cannot stand for over about 15 minutes, and that's leaning on something. I have some lipo from an earlier used med (Crixivan).  I've been taking meds for over 20 years.  And they've improved a lot. 

You always have these people on this forum.  Most of us have been where you are, and though I know no one who likes living with the HIV, a lot of people have come to accept that we have this and need to learn how to live with it, take meds, and just go on.  I have a good family, and great friends.  I have one best friend, and some of the people on this forum have become great personal friends.  That makes a difference.  Good luck, I think you'll be alright.

I feel pretty lucky now.
My grandmother was a diabetic and also suffered from mental illness.
A horrible combination. :(

She eventually lost both of her legs. One at a time. :'(

Thank you b. and thank you as well jeff for telling it like it is dealing with other long term health issues on TOP of/or without having to live with hiv.

Life can be challenging with surprises along the way.
The only thing to do is to make the best of it.
There are no other options and life can certainly still be pretty darn good!

I have been here actively for a relatively short period of time and also would like to the forum for giving me hugs and kind words.
This^ would include EVERYONE here.

BT, thanks! :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #19 on: April 06, 2013, 08:36:38 PM »
Thanks for the responses :) Good information

How did finding out you were positive change the way you felt about yourself? How you saw yourselves?

Do you still feel that way? Do you see yourself differently now than you did then?

What is the change?

And how did you make that change?


Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #20 on: April 07, 2013, 06:38:52 AM »
Mitch, you're welcome. :-*

Wow, finding out I was + didn't change how I felt about myself.  Why would it?  I'm the same person I was.  In fact, I feel a little better about myself.  I fell into addiction again after testing positive, and now am coming up on 8 years sober (I don't really like saying "clean").  So I can see where I was, where I came from, and it's much better today.  But that wasn't related to the HIV.  HIV has never had a hand in how I feel about myself. 

When I first tested positive, I shared the information with a biker friend of mine.  He said "well, it's just something else to deal with."  Of course, back then I thought that was a misguided answer.  But in reality, he was right.  I tried to deal with it as soon as I tested positive, mental health wise, and that helped, I believe, in how I've handled the virus and feelings surrounding that throughout the years.

So I guess I don't know what you mean about HIV changing how someone feels about oneself.  I do understand some people feel "dirty" after testing positive, but in reality we're the same persons.  And we can often deal with issues surrounding mental illness, plain depression, unhealthy habits etc., after testing positive.  It's all up to the person how he/she wants to handle the diagnosis. 

By the way, my delving into addiction again had nothing to do with testing positive.  That happened some years after being diagnosed.  Of course, when I was strung out I did not deal with the HIV and was always being diagnosed with thrush, bronchitis or some other illness, fungus etc., and my t-cells dropped way low because taking my meds was not high on my list of priorities.  Just wanted to make that clear to the OP, as some people may go back into addiction because of a diagnosis; that wasn't the case with me.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Miss Philicia

  • Member
  • Posts: 24,065
  • celebrity poster, faker & poser
Re: Didn't realize how having HIV affected me
« Reply #21 on: April 07, 2013, 07:44:08 AM »
I'd much rather deal with HIV than deal with this atrocity.
"I’ve slept with enough men to know that I’m not gay"

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #22 on: April 07, 2013, 01:01:13 PM »
Mitch, you're welcome. :-*

Wow, finding out I was + didn't change how I felt about myself.  Why would it?  I'm the same person I was.  In fact, I feel a little better about myself.  I fell into addiction again after testing positive, and now am coming up on 8 years sober (I don't really like saying "clean").  So I can see where I was, where I came from, and it's much better today.  But that wasn't related to the HIV.  HIV has never had a hand in how I feel about myself. 

When I first tested positive, I shared the information with a biker friend of mine.  He said "well, it's just something else to deal with."  Of course, back then I thought that was a misguided answer.  But in reality, he was right.  I tried to deal with it as soon as I tested positive, mental health wise, and that helped, I believe, in how I've handled the virus and feelings surrounding that throughout the years.

So I guess I don't know what you mean about HIV changing how someone feels about oneself.  I do understand some people feel "dirty" after testing positive, but in reality we're the same persons.  And we can often deal with issues surrounding mental illness, plain depression, unhealthy habits etc., after testing positive.  It's all up to the person how he/she wants to handle the diagnosis. 

By the way, my delving into addiction again had nothing to do with testing positive.  That happened some years after being diagnosed.  Of course, when I was strung out I did not deal with the HIV and was always being diagnosed with thrush, bronchitis or some other illness, fungus etc., and my t-cells dropped way low because taking my meds was not high on my list of priorities.  Just wanted to make that clear to the OP, as some people may go back into addiction because of a diagnosis; that wasn't the case with me.

I think that maybe part of the reason you don't understand my question has to do with your being poz for so long and also the time you became poz.

I remember 1989 and there was a big backlash by then toward HIV. But there wasn't decades of negative images and stereotypes out there. People had developed a number of views regarding HIV. Today they have more and some of them are truly twisted. I mean if I hear one more fool saying they feel they are liberating someone by making them poz or it free'd them when they became poz my head may explode.

I tested poz in 2008. By then I had lived as a negative person for decades. I truly thought I had missed the bullet so to speak. I had seen all the negative messages and the devestation caused by this disease as an outsider.

Then it all became internal. It has affected my emotional make-up so much more than I ever thought it could have. I hate to say it but I've become nervous and anxious since testing poz. I no longer see myself as someone others would want. As my therapist stated ... I see myself as "damaged goods".

Which floors me as I've never discriminated against a poz person before. I dated poz guys (knowingly and used protection) ... And then my ex (unknowingly). I just viewed it as a virus and that was it.

When it became part of my body. It seriously shook my reality.

That's the best way I can respond ...

BUT WOW .. since 1989 ... That is truly amazing ..
« Last Edit: April 07, 2013, 01:11:05 PM by wow1969 »

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #23 on: April 07, 2013, 04:57:41 PM »
You don't think there were negative images surrounding HIV in 1989?  When people outside my circle, who didn't know me, found out I was positive, I was immediately thought to be a hooker.  Plus, in my small town, HIV was not talked about hardly at all, so I was totally surprised when I found out.  But there were plenty of negative images surrounding HIV back then.  A person was either: gay, a drug addict, or a hooker.  Oh, there was that Ryan White kid less than 200 miles from me.  But even back then, people with hemophilia faced a backlash.  Did you ever hear the story of the Ray brothers (I believe it was that family that had their house burned down where the sons were hemophilic and HIV+). 

I've just had more time to accept and process it.  I don't like it.  Not at all.  But I have to just go on.  So I need to do what I need to do.  I also don't want to be in a relationship or "go out" with someone.  I enjoy my freedom and hanging out with friends. I've been through a marriage since testing poz, so don't think you won't be able to find someone.  You'll work through this.  Even if you can't see it now, just keep going.  You'll get there.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #24 on: April 07, 2013, 05:40:26 PM »
You don't think there were negative images surrounding HIV in 1989?  When people outside my circle, who didn't know me, found out I was positive, I was immediately thought to be a hooker.  Plus, in my small town, HIV was not talked about hardly at all, so I was totally surprised when I found out.  But there were plenty of negative images surrounding HIV back then.  A person was either: gay, a drug addict, or a hooker.  Oh, there was that Ryan White kid less than 200 miles from me.  But even back then, people with hemophilia faced a backlash.  Did you ever hear the story of the Ray brothers (I believe it was that family that had their house burned down where the sons were hemophilic and HIV+). 

I've just had more time to accept and process it.  I don't like it.  Not at all.  But I have to just go on.  So I need to do what I need to do.  I also don't want to be in a relationship or "go out" with someone.  I enjoy my freedom and hanging out with friends. I've been through a marriage since testing poz, so don't think you won't be able to find someone.  You'll work through this.  Even if you can't see it now, just keep going.  You'll get there.

No, not at all .. I know there were in 1989 ... I just mean that the beliefs have evolved and changed over time ...

I know I'll be with someone again at some point but I'm with you .. Right now the last thing I want is a relationship ... I have too much on my plate to do that ...

Thanks .. The best thing about interacting with longterm survivors is that you can see that there is a future :-)

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,695
  • How am I doing Beren ?
Re: Didn't realize how having HIV affected me
« Reply #25 on: April 07, 2013, 06:30:57 PM »
Wow ... in 1985 - 89 there were politicians proposing rounding us up and quarantining   us . People who were HIV positive and out about it were not allowed in public swimming pools and were often evicted from their apartments .

In 1986 I came out as HIV positive and lost a successful business as well as most of my friends and family , my insurance premiums went sky high and was eventually canceled and there wasn't anything I could do . No one blamed anyone for treating us this way because no one really knew enough about HIV and stigma was fear driven and relentless .

Please know that I'm sharing this with you so that you know a little bit more of our history with us that have been living with HIV since those awful times and not trying to one up anyone on how tough living with this virus is .

Offline wow1969

  • Member
  • Posts: 208
Re: Didn't realize how having HIV affected me
« Reply #26 on: April 07, 2013, 07:29:17 PM »
No, never said it was peaches and cream in the 1980's.

Anyway, I"m done with this thread. It's not going where I was hoping it would. Which was my fear when I posted here.

I've seen this happen time and time again on these forums and have experienced it a number of times myself. It's why I so rarely post here any longer.

I was posting for advice how to deal with my emotions regarding HIV.

Understanding, medication and society have changed since the 1980's and therefore views of HIV have evolved and changed as well. That is a fact.

I'm dealing with it today as a relative newbie. Not someone who has had it for decades. So yes, I believe that my experience is different than other people's.

That does not change or lessen others experiences. It only states what my experiences are and what is potentially contributing to them.

Anyway, thank you to those who contributed. I have figured somethings out and that is very much appreciated.



Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #27 on: April 07, 2013, 07:55:21 PM »
Wow, I don't believe Jeff was meaning any harm with what he posted.  I think he was just reliving some of his past.  And sharing what he personally went through.

I don't understand what you mean about the views surrounding HIV evolving.  What have they evolved to?  If you could explain, maybe I could help you there.

Also, you said you've "seen this done" time and again on this forum.  What exactly do you mean?  I have seen nothing negative aimed at you, and wonder if you imagined there were barbs, when there were none. 

I can tell you, as a woman with HIV, it is difficult enough for me to "fit in" with my positive co-conspirators.  Luckily I've run across mostly very accepting counterparts.  But it is a unique experience, being a mother, and grandmother living with HIV.  I don't know why I said that, except you said you feel "different."  I do also at times.  But I don't let that keep me from wisdom I can soak up, or friendships that I cherish.  Don't know if that makes sense.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,695
  • How am I doing Beren ?
Re: Didn't realize how having HIV affected me
« Reply #28 on: April 07, 2013, 08:19:04 PM »
 




Please know that I'm sharing this with you so that you know a little bit more of our history with us that have been living with HIV since those awful times and not trying to one up anyone on how tough living with this virus is .


I cant see anything that was said that could possibly cause the reaction WOW had after I posted , nothing .


Offline mitch777

  • Member
  • Posts: 3,520
Re: Didn't realize how having HIV affected me
« Reply #29 on: April 07, 2013, 08:34:10 PM »



I cant see anything that was said that could possibly cause the reaction WOW had after I posted , nothing .

me neither. :(
31 years hiv+ (oct. 2013) with a curtsy.

Online mecch

  • Member
  • Posts: 11,650
  • red pill? or blue pill?
Re: Didn't realize how having HIV affected me
« Reply #30 on: April 07, 2013, 08:55:53 PM »
I tested poz in 2008. By then I had lived as a negative person for decades. I truly thought I had missed the bullet so to speak. I had seen all the negative messages and the devestation caused by this disease as an outsider.

Then it all became internal. It has affected my emotional make-up so much more than I ever thought it could have. I hate to say it but I've become nervous and anxious since testing poz. I no longer see myself as someone others would want. As my therapist stated ... I see myself as "damaged goods".


I seroconverted in 2008. Decades HIV-. Safe sex. some HIV+ boyfriends, lovers. Some death.  Saw and felt a lot...

I don't understand HOW you quickly internalized stigma after your serocoverion. You claim you acted without stigma, over the decades.  Then suddenly, HIV+, all the stigma cut you to the bone. 

Really you have to take these thoughts, fears, out to the picnic table in bright noon light, maybe with a good friend who knows you well, and hammar them to see how flimsy this is...  Getting HIV is not a deal breaker.  Yeah, its not a great job, or apt,, not a sexy sports car or 6 pack abs.  But its not a deal breaker for a lot of people.  And yes there are some upsides to it... Once someone has his mojo back as an HIV+ person, he/she is a bit different and in some good ways...

So maybe examine why you allowed the damaged goods lable to stick.  You could have laughed at it.  Or taken it seriously but put it in a precisely limited place...

Again, I think HIV delivered the stamp, but the way you are reacting to the stamp has to do with your personality, character, long experiences, etc...

Has someone actually REJECTED you for being HIV+, in the last few years?  Are you putting your heart, your social company, your ass, out on the different scenes, working a bit to attract and seduce -- and been picked over, ignored?  Or has fear (hurt) (rejection?) made you constipated, immobile.  May be the taint of HIV is something you have overly applied to yourself, and you're backed up in a corner, expecting the worse....
« Last Edit: April 07, 2013, 09:02:48 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #31 on: April 08, 2013, 04:57:17 AM »



I cant see anything that was said that could possibly cause the reaction WOW had after I posted , nothing .

Me either, and he didn't come back to explain.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: Didn't realize how having HIV affected me
« Reply #32 on: April 08, 2013, 04:23:32 PM »
Me either, and he didn't come back to explain.

Sadly I don't hink he will, I think it's a shame when people join the forum only to hear the answers they want, shame really because the great advise and the history behind the advise can help them deal with the many emotions they will go through along the way, I know when I first came here it was the LTS and the experts that got me where I am today, and for that I will always be thankful.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,695
  • How am I doing Beren ?
Re: Didn't realize how having HIV affected me
« Reply #33 on: April 08, 2013, 05:03:50 PM »
Sadly I don't think he will

Another frustrating part is that I was trying to do was follow Betty's lead and set a civil tone for anyone who may have felt inclined to reply to his thoughts on the evolution of HIV and the way stigma has effected us ... it was on topic . No good deed goes unpunished .

I'm not specifically talking about WOW but I wish some of the new members who are new to HIV would get it through there head once and for all that us LTS are not the enemy and that we are genuinely intrested in helping them come to terms with HIV and have no interest in tormenting them .

Also I'm asking people who claim that some of the most experienced among us are no longer able to clearly see what its like to be HIV positive in the 21st century to consider this  ... we still live with the same stigma that you are experiencing , we still struggle with meds , insurance issues and yes ... we still have sex and date .

The fact that some of us are seasoned and a little more adjusted to living with HIV and still choose to log in to this site and get and give support means something that shouldn't have to be spelled out .

I'm just asking for people to think about this and try for the good of ALL of us to stop this us against them bickering ... its simply not worthy of our time .

The OP said he was done with this thread , so this is not a hijack , its my rant of the day LOL .

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #34 on: April 08, 2013, 06:34:27 PM »
The OP said he was done with this thread , so this is not a hijack , its my rant of the day LOL .

Preach Jeff! ;D
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: Didn't realize how having HIV affected me
« Reply #35 on: April 08, 2013, 11:02:49 PM »
Well said Jeff...love ya.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Didn't realize how having HIV affected me
« Reply #36 on: April 08, 2013, 11:10:50 PM »
Sadly, as it appears that LTS folks get shot down rather thoroughly when we dare to venture outside our ghetto, a great deal of real experience and strength is wasted and people have to struggle through pathways many of us have walked, paved, and understand.

It's sad, and it's not something I understand.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline mitch777

  • Member
  • Posts: 3,520
Re: Didn't realize how having HIV affected me
« Reply #37 on: April 09, 2013, 08:47:05 AM »
All of the replies on this thread were thoughtful and heartfelt.
We tried to share our experiences and ideas.
The OP reached out for help.
We reached out to him.

He doesn't seem able to have much confidence in our (LTS) ability to relate to him.
Help often comes in unexpected ways and from unexpected sources.
I hope he returns one day soon.
31 years hiv+ (oct. 2013) with a curtsy.

Offline wolfter

  • Member
  • Posts: 4,506
Re: Didn't realize how having HIV affected me
« Reply #38 on: April 09, 2013, 09:08:43 AM »
I've reread this thread several times thinking I've missed something.  I see nothing but well thought out and precise comments.

I've already forgotten who wrote it, but I too remember hearing how we should all be rounded up and quarantined.  I don't think we LTS relive these memories for our own well being, but as a means to show the reality and history of this virus.  I sometimes become overwhelmed at recalling this history, but know that it's important for recently infected folk to know the struggles we endured.

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online mecch

  • Member
  • Posts: 11,650
  • red pill? or blue pill?
Re: Didn't realize how having HIV affected me
« Reply #39 on: April 09, 2013, 11:08:48 AM »
To the LTS, I don't think the OP was turned off by your input, in particular. 

AS BT summarised, we can't really know what he didn't get in this thread because he didn't elaborate....

Seems to want the secret to peeling off the "damaged goods" label. In order to be happy..  But he's rather insistent and ruminative on all the stigma and "permanency" of something that is, to him, existentially different about being HIV+, after having been HIV-.  So I doubt that label can be peeled off.

I think the secret is that everyone is beautiful and human and yes everyone has their damage and baggage.  So you just gotta find a way to compartmentalise --- if you can't manage to feel 100% "undamaged" - and who can, really?  I mean, this is just successful adult living - love yourself, warts and all.  Take it in stride and try to make that lemonaide.  The alternative is permanent depression, lack, sadness, fear...

HIV may be a permanent health challenge, but it doesn't have to be a permanent drain on the spirit.  Just like any other piece of crap that falls into our lives....   

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Didn't realize how having HIV affected me
« Reply #40 on: April 10, 2013, 03:06:10 AM »
Most everyone past the age of 25 or so has had their heart broken, or come out to unfriendly people, or been betrayed or faced the death of someone close. The passage of time itself strips us of our "innocence" and replaces it with "baggage." We love and even live with more trepidation, as fear becomes our reluctant but necessary ally.

No one worth knowing gets past these membranes without damage, without alteration. We can't escape it, even when we are standing stock-still in terror. Life, and the many slings and arrows that accompany it, find us all. There's this weird idea that this diminishes us. It doesn't. It enriches us, if we let it. It turns us from victims to victors, from people who need saving to people who can find the strength to help others.

The trick I think is to abandon the child/ISH and not let go of the child/LIKE. And it's imperative not to confuse the two.

The ChildISH wants the impossible - to be HIV negative, to find the "perfect" partner, to live in a world where this viral deficit doesn't matter. And it's not going to happen.

The childLIKE manages to find the sweet pearls of perfection in his/her flawed, loving mate. Manages to overcome stigma and rally around her/him a group of like-minded souls who refuse to succumb to the banality of the unweathered soul. It's really a choice we can make, and ultimately have to make. We are swept inexorably down the river of time. To arrogantly, impudently demand that this river take us back to an idyllic place is absurd and hurtful.

To be specific, we are, Blanche. We ARE in that chair. And it's up to us to make that chair a throne. Some do. Some flame out trying to avoid it. Some wrap themselves in the comfortable cloak of anger and bitterness. Hopefully, NOW, there are medical interventions that allow us the luxury of time- to correct ourselves, to grow, to learn, and to become better people. For many people, HIV will no longer simply kill you where you stand. We don't get off that easily.

We get to grow up, and grow old with it. We live, like it or not, in linear time. And each moment we spend immersed in the past (or the idyllic past. or idyllic future) we run the risk of becoming stranded there, suffocating.

I wish that the OP had been able to hear that.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,695
  • How am I doing Beren ?
Re: Didn't realize how having HIV affected me
« Reply #41 on: April 10, 2013, 09:39:38 AM »
Thanks JK ... Thanks .

Offline OneTampa

  • Member
  • Posts: 2,195
  • "Butterflies are free."
Re: Didn't realize how having HIV affected me
« Reply #42 on: April 10, 2013, 12:16:00 PM »
As my dear departed Haitian father would say, "The chat gums beat-a-ma much wisdom."

Very well, thoughtful and caring responses to WOW.  I hope he at least comes back to read what everyone has written and accepts these gifts of wisdom.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline elf

  • Member
  • Posts: 607
Re: Didn't realize how having HIV affected me
« Reply #43 on: April 17, 2013, 04:14:44 PM »


anyone who would say that they don't get scared Is lying.

I'm not scared anymore.
I've developed immunity to fear.
 ;D
Not even thoughts like ''if I move to another country, how will I manage to pick up meds in my home country every six months'' can scare me anymore.

Set your goals, and have no fear.
Fear is the most useless feeling ever.  ::)
Fear is imposed on us, by others, in order to divide us, and make us ''silent''.

Focus on positive (not on being HIV positive).
Let's have a Kiki!

Offline dshrfrshr

  • Member
  • Posts: 17
Re: Didn't realize how having HIV affected me
« Reply #44 on: April 26, 2013, 02:37:27 AM »
Appreciate the honesty and advice in this thread, been having anxiety issues with a move Im making soon, partially stemming with how lonely I will be once I complete it.  Its been about 4 years since I seroconverted, and I still feel damaged and unlovable and afraid how people will judge me if they know my status.  I sabotage pretty much all my relationships in fear that they would reject me if they knew the truth, much like I did when I first came out as a gay person.  The move I am making is for a job I went to school for and have always wanted, but its also to a small and really conservative town.  I still have the childish dream that if I was negative, I could potentially meet my prince charming and live happily ever after, but instead I believe I'll be the town pariah shunned if anyone ever knew my status.  I really should probably be in therapy, but as you can see I have a fear of stigmas (and a present lack of insurance, making this move and job all the more necessary).  Sorry for the thread hijack, just feels nice to read experiences of people who can relate. 
12/30/08 last test -
3/09? seroconverted
6/19/09 tested +
8/10/09 cd4 504 (23.5%) vl 4155
10/14/09 cd4 504 (25.5%) vl 10550
12/24/09 cd4 573 (27.5%) vl 6555
Started Atripla, undetectable since August 2010

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,938
Re: Didn't realize how having HIV affected me
« Reply #45 on: April 26, 2013, 05:13:40 AM »
Dsh, you need to figure out what it is about you that you do not think others can accept (other than the HIV).  Many of us may have felt "unloveable" at times due to the HIV, but have other personality traits that make us loveable, outweighing any possible bad feelings because of the virus.

I hope you get insurance through your new job and can get into therapy, or at least find your county mental health center, many of which operate on a sliding scale, and get into therapy that way.  It's been four years and it's time for you to move on and stop feeling that others won't want you.  But you have to feel good about yourself to do that.  I know that many times, when I feel others won't accept me, it all comes back to my insecurities, issues I don't feel I've resolved with myself, rather than what others are thinking or feeling.

Good luck.  If you do more soul searching and can talk to a professional therapist I believe you will be fine.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.