Sex After Diagnosis?

[ga1964]

I'm was not sure whether to post this hear or in the Mental Health Forum because I know that the majority of the answer lies with me mentally, so bare with me please.  I'll try not to get too graphic.

I was diagnosed 3 yrs. ago come Dec. after having major surgery.  After I recovered and the staples had been removed, my partner and I masterbated together twice.  I don't know if that really counts as having sex or not, but since then, we have not had any form of sex.  Its not that he won't have sex, but I don't feel comfortable about having sex with him.  We don't know his status for sure, because he won't get tested. (He says, he does not want to know.)  We always used condoms, so there is a good chance that he is Neg. 

Anyway, The two times we J/O, it felt more like a "medical" procedure than sex.  He insisted we lay a hand towel over my incision to protect it from fluids.  I know he meant well, but it just made it feel "medical".  I know somepeople enjoy Role Playing medical scenes, and it might have been fun, if I had not just spent 2mos. in the hospital and another mo. recovering at home.  Since then, I have taken care of getting off by myself.  I would like for us to have sex again, but I feel guilt just thinking about asking him to have sex.  I'm sure he would have sex if I asked, but the thought of it panics me.  If he is Neg., I worry that someday he will test Poz.  I also feel guilty about asking him to have sex because I'm the one at fault for my being Poz., and I feel like I should not ask him to put himself at risk by having sex with me. 

I know this is all in my head and that other Poz./Neg. couples have sex safely, but I can't seem to get past the guilt and anxiety of putting him at risk, no matter how minute. 

I guess what I'm hoping to find out is, Will I ever feel comfortable having sex with him again?  We had a great sex life before my diagnosis and I would love to get it back, but now the thought panics me to my core.  If he is Neg., I don't want to infect him by accident.  Do I even have the right to ask him to put himself at risk?

Thanks for reading and all thoughts are appreciated.

[BlueMoon]

He says, he does not want to know.

Well that's just crazy.  'Off-topic', I know, but that's the first thing to find out.  What if he's poz? 

[joemutt]

If he s neg you can still have sex in many ways, I don't underestimate the psychological factor,
but you could explore what you might do together and your feelings around this.
If he's poz that would open a whole new perspective. Be Well.

[Ann]

(He says, he does not want to know.)

Do I even have the right to ask him to put himself at risk?

Does he have the right to put you through the constant mental torture surrounding the uncertainty as to his status? If he is poz, does he have the right to put you through his inevitable hospitalisation when he finally succumbs to an OI that could have been prevented?

Those are the questions I'd be asking.

Get him tested!

Ann

[Miss Philicia]

Does he have the right to put you through the constant mental torture surrounding the uncertainty as to his status?

Exactly.  I really don't understand why ga1964 is not asking himself and his partner this question. 

Basically if the partner is poz then ga1964's sex problem is instantly resolved, more or less.  If he's neg, then they just use condoms consistently.  There are plenty of couples that do this with no problem, and I've done it myself and neither I nor my partner sat around worrying about infection.

Also, the fact that the partner would cover an incision with a towel to prevent infection from someone who is already HIV+ doesn't make any sense.  ga1964, many of your previous posts we've discussed the need for some professional help to ease your multiple levels of anxiety and depression, but you always find some reason not to seek this out.  Again, I encourage you to do so and I also encourage you to force the testing issue with your partner, as this is only going to get worse every month he doesn't get tested.

[Ann]

ga, I'd like to suggest you read through the Spinning Wheels thread started by Leatherman. He and his partner thought  they were in a serodiscordant relationship and his partner was never tested - until it was too late. Leatherman's partner was tested when he was very ill in hospital - and subsequently died of OIs that could have been prevented had he tested earlier.

GET HIM TESTED! This isn't negotiable. Or at least it shouldn't be.

Ann

[ga1964]

Thanks for your input.  I have tried talking to my partner about getting tested, but it usually ends in an argument and raises my stress level.  (The last thing I need is more stress.)  I can't hit him over the head with a bat and drag him to get tested.  I have told him how important it is for him to get tested.  My I.D. has also asked about his status and all I can tell him is that I have tried to get him to get tested.  Yes, it would relieve some stress for me to know about his status, but if he tested Poz., I fear that might raise my guilt about my HIV.

Philicia, The reason my partner covered my incision was not because of HIV worries, but to make sure that I did not get any other kinds of infections while I was healing.  He did it with good intentions, but it did make everything feel like a medical procedure.

I have a hard time talking to him about my HIV out of fear that I might convince him that he should have left me when I was diagnosed.  (I know that a lot of my fears come from my own mental mind f*ck that I have had due to my own guilt about getting infected.)  I can't help it, but I can't get rid of my guilt.  I really wish I could let go of the guilt.

As for therapy, I have tried, but end up feeling worse after a session than before the session.  I have asked my ID about therapist that deal with HIV, and he says he does not know anyone in my area that specializes or has in-depth knowledge on HIV.  I would like to find a therapist that could help me with my issues, but unfortunately I don't in a major U.S. city or close to one that have therapist that focus on HIV issues.

Thanks again for your thoughts and opinions on this issue.

Ann, I have started reading the thread you suggested.  There is a lot there to read and I will continue to read it.

Thanks again to all of you.
 

[LBpozguy]

Hi GA:

I certainly agree with Ann and Miss Philicia. First and foremost your partner needs to get tested. If he is POZ then that will take care of the problem.  I can relate to you. My partner is NEG. I first tested POZ Sept 08 and like you have worried about infecting my partner as well. I have not had sex with him since but that is my doing. Not his. This is something I need to work on in my head. We have two VERY good friends that are in a +/- relationship and have sex all the time. SO like you, I need to work this out myself.

But again, work on your partner to get tested. That is going to be the first step along the road.

Good luck  

[Miss Philicia]

If your partner were to test poz ga1964, then there's really no way to tell which of you infected the other.  Did you ever consider that your partner may have his own guilt issues?

Guilt issues are never helpful.  They change nothing in terms of HIV infection. Any therapist regardless of experience with HIV should be able to deal with guilt issues, or even a lift threatening illness.  Don't make excuses up in your head that prevent you from moving forward and obtaining help.

[Ann]

ga,

I get the feeling that part of the problem is that you might be afraid you infected him (you keep talking about feelings of guilt) - but if he tests positive, who's to say he didn't infect YOU? I've just skimmed through your posting history and I couldn't find any mention of how you might think you became infected. You and your partner have been together for over 26 years now, have you always been monogamous? I think this is relevant because a big part of why he doesn't want to know his status is probably because he fears he was the origin of your infection. He may also be afraid you'd think the same and blame him. Maybe this issue needs to be discussed so you can remove the idea of blame. It doesn't matter who gave what to whom, but it does matter that he finds out his status. You were diagnosed three years ago and your initial numbers pointed to the fact that it was not a new infection. You say you had a lot of sex before your diagnosis, and that means there's a good chance he IS positive, regardless of the origin.

Do you really want your partner to end up like Leatherman's partner? You're going to have to push this issue. I know it's difficult, but it has to be done. Maybe you could buy a Home Access test and persuade him to use it. Tell him you want him to be at your side and healthy, not dead and buried. It really is that stark.

As for the therapy issue, it's not uncommon for people to feel worse after a session - but that doesn't mean it's not working, in fact, quite the opposite. Also, from reading through your history, I discovered that it sounds like you've only ever tried therapy once, for less than a year. It also sounds like the therapist you went to just wasn't a good fit as she was much younger than you etc. You can shop around for a therapist just like you can shop around for anything to find just the right fit. You wouldn't buy a pair of shoes that turned out to be uncomfortable and continue to wear them, you go and buy a new pair. Same thing with a therapist. And therapist are trained to deal with your feelings, no matter what's going on with you physically. Your specific illness is irrelevant on the therapy couch.

I've just tried to post this and found Miss P is thinking on the same lines.

Ann

[leatherman]

Do you really want your partner to end up like Leatherman's partner? You're going to have to push this issue. I know it's difficult, but it has to be done. Maybe you could buy a Home Access test and persuade him to use it. Tell him you want him to be at your side and healthy, not dead and buried. It really is that stark.

oh lordy! Ann, you aren't just whistling dixie! (I just moved back south to the Carolinas after living 25 yrs in Ohio, and all these colloquialisms are just pouring out of me nowadays. LOL) But, GA1964, this really is NO laughing matter. I'll try to give you a shortened version of my long tale with it's very terrible ending - that still affects me today, not only in the grief I daily bare but even to my very housing arrangment.

I moved to OH with a partner in the late 80s. After 10 yrs together, I lost him to AIDS and I nearly died a couple times myself. After that, I had sworn off falling in love again so that I would never put someone in the position of feeling like I did when I lost Randy.

However, love had other plans for me. My best friend broke up from his long-term partner probably a year after my partner died. This friend tested negative several times through those years. As time went by we spent more and more and more time together. Finally at Christmas of 2004, I came to grips with the fact that we had already actually been a couple for several years. Love had happened again and I was very nearly too scared to accept. But LOVE isn't something to deny or throw away, and Jim and I spent 10 wonderful years together.

Then just a little over a year and a half ago, he became ill with "the flu" that he just couldn't shake off. On March 1, 2008, we put him into the hospital to try to figure out what was wrong. By my birthday (Mar 14th) we knew he had not only AIDS but 3 giant tumors of non-Hodgkins lymphoma, and all I could do was pray that HE wasn't going to die like Randy. After 60 days of hell in the hospital, I brought him back to his childhood home. Nine days later, and nearly 14 years to the date and nearly exactly as Randy had, Jim died on May 1, 2008.

Just like that - in 69 days he went from nearly healthy as a horse ,but with a flu, to dead.

Of course, underlying that "healthy as horse" was actually HIV and cancer ravaging his body unknown to us. You don't know the talks my ID doctor and I have had about that since Jim's passing. For years Jim went to my doctor appointments with me and yet not once did the doctor or I (or even Jim himself) suggest that Jim get tested again. What fools, what fools we were. 

I can't tell you how much my life has changed. Twice now I've been "widowed" by AIDS. Both times I've had to wonder if I was the cause of their deaths. I have thought that less with Randy, as back then AIDS was just coming to light. But with Jim, even though we ALWAYS had safe sex, I'll probably still always have some doubt. Was it my fault? Was it his? If only, if only we had gotten him tested. Of course, he would have still been positive (proably from some unsafe sex before our relationship) but just as the meds have kept me alive, so Jim might be alive too.

I mentioned how I'm living in South Carolina now -I just moved here a month ago and this change in my life has been because Jim passed away. I couldn't afford, on my disability check, to continue OUR lifestlye, and so I lost the car, the house, a house I rented with a friend for the last year, and now all my friends from 25 years and nearly everything I owned to move into a single room in my Mom's house.

I have tried talking to my partner about getting tested, but it usually ends in an argument and raises my stress level.  (The last thing I need is more stress.)  I can't hit him over the head with a bat and drag him to get tested.

Hitting him over the head and dragging him is a lot less stressful than begging friends for money for the cremation costs and scattering his ashes during a memorial service. As one friend to another, you really ought to choose the lesser of those two evils. 

Print out my other thread if you have to. Read it. Make your partner read it. Go read my blog at http://reigningpages.com/leatherman . Go back and read from Feb 2008 to at least June 2008. Sure it's a lot to read, but a lot happened. However it all happened in the course of ONLY TWO MONTHS. That's how quickly a long-term love can change to death! You BOTH need to realize how much your lives could change from the consequences of him not being tested (annually, at the very least).

I mean this with only the deepest love and compassion  but y'all are fools to hold off even one day more in not having your partner tested. As Ann said, it really is that stark! If I could speak to you or your partner in person right now, I'd be begging and crying for you to not put this off one day longer. Each day that goes by could be another day his very health and life is threatened without either of you knowing it and without any treatment.

But listen, let's hope that things aren't as dire as they were in my situation. Of course, in this post, I'm really trying to impress on you just how close to the fire you and your partner could be playing. With luck, I'd like to think that you'll find out your partner is negative. That'll ease a lot of mental burdens - though of course not all. You'll "still" be in a sero-discordant relationship (that is if he isn't Poz already) and you'll have to deal with many of the issues that Jim and I thought we were dealing with all those years. But "dealing with issues" (including even the issues you yourself are having with being Poz) are, as I pointed out, a lot less of a hassle than dealing with a partner's death.

If I can do anything, say anything, be of any help, you only need to contact me! PM me here or grab my email from my website. (Hell, if need be, I'll even give you my phone number.)

hoping only the best for you and your partner,
mikie
(who's going to cry for a bit while I think about my Jim)

[ga1964]

Ann and Philicia,

I am sure that I am the one that brought HIV into our relationship.  Several years ago my partner lost his Mother after a long illness.  He was a full time care provider for her for the last 2 years of her life.  During this time we both were under a lot of stress.  His life became consumed taking care of her, which I fully understood, and I tried not to add to his stress by my feelings of being left behind. 

After a while, during an immature period, I started looking elsewhere to fill the void.  I ended up doing some stupid things that put me at risk, so I'm sure he did not infect me.  If he is infected, it is my fault.  I would have infected him.    The only light of hope that he is not infected, is that we started using condoms before the time frame my ID. thinks that I got infected.  I can only hope that he is Neg.

I have asked him many times to let my ID. test him, but he refuses.  He has not had any illnesses in so long I can't really remember the last time.  I know that does not mean he isn't Poz. because I had not had many illnesses before I was taken to the ER 3yrs. ago.  I will continue to try to get him to get tested.

Thank you both.

LB,

I'm sorry your going thru this also. I want to have our sex life back, but can't get past my worries.  I hope you can find peace and you can find the solution that works for you.

Take care.

leatherman,

My deepest sympathy to you.  I can not begin to imagine what you have been through.  I can only hope that somehow I can avoid having to.  I don't know what else to do to get him to go get tested.  I think the odds would be in his favor, but there is always the chance.  I will continue to read your blog.  I'm a slow reader, so it might take me a while.  Thank you for opening your heart and your story so that I might be able to find some peace. 

God bless you.

[weasel]

Hullo GA  ,

                    I have Been with my Husband for  almost 29  years !

    I have been POS  all  that time !

     When I came down with  AIDS   5 years ago I changed !

    I now FEAR  SEX !

       Bob is NOT   HIV POS!  and I would like it to stay that way !

    We   have a great relationship , BUT   sex is a huge issue !

    I would rather he went and found a  NEG man  to have sex with !

   This would go against  EVERYTHING I stand for , BUT  i would not be giving  HIV to

  Him if a rubber broke !

    It is getting better , Most things do 

    Taking it slow is fine !

   When we go to bed I know my loving husband is right there and I sleep like a

  Clam at high tide 

                              be well  , Carl

[ga1964]

Hi weasel,

You have describe a lot of what I fear.  My biggest worry is something happening that would put him at risk, so I handle things by myself. 

I miss the sex we had.  It was intense, almost primal, but passionate.  I think it comes from knowing someone so long that the two of us blended into one.  The release was  so mind blowing, the high seemed to last for hours.  Oops, didn't mean to go too deep.  Sorry.

 I also relate with letting my partner fill his needs with a Neg. person.  It would be hard for me, but I would understand. 

Guess it's the karma I deserve and she is such a B*tch.

Thanks for taking the time to reply.  It helps knowing that I'm not the only one having these feelings.  Not that I'm glad you are, and I hope things get better for you, but I don't feel like I'm the only one and if others have made it through this, maybe I can too.

Thanks again.   

[leatherman]

My deepest sympathy to you.
I can not begin to imagine what you have been through.
Thank you for opening your heart and your story so that I might be able to find some peace.

Hey again GA 

Thank you for your condolences. I thought losing Randy was the worst thing that had happened or would ever happen to me. Why I was able to deal with my own hospitalizations and OIs and horrible med regimens through many years because I thought nothing worse could happen. How wrong I was. Losing a second partner when we both so vividly knew the consequences (jim had been Randy's friend too) was just a very stupid mistake that I am paying dearly for every day as I grieve for my two lost guys. I would hate to see anyone else pay such a horrible price, hence my warning. 

I hope my warnings and story didn't freak you out more than I'm sure you are already troubled and worried. But bear in mind that this is not all your worry alone. Your partner has his own responsiblity in this too. It is his health that is at risk here that we're talking about. So this truly is HIS problem. Unfortunately HIV untreated always leads to death, as Jim and I found out the hard way.

But your partner also has his own fears. Just like all of us did back when we tested and hoped for the best news but got the bad news. Jim was a smart fellow and I believe, in the months that I've spent looking at this situation in hind-sight, that he simply chose not to get tested so he just wouldn't know. Like avoiding the knowledge would somehow help him. But sadly Jim was counting on the "odds" too, and we see where that got him.  Ignorance of his (your partner) status is no solution for him.

In our years together it wasn't that I was so self-centered, but worrying about myself and my health issues allowed us both to not keep his health in mind too. He so prided himself on taking care of me that he didn't take care of himself in the long run. Jim paid the dearest price for not taking responsibility for his own health. In the long run, though I hold not an ounce of bad feeling about it, he didn't do me any favors either. All those years of care he spent on me have been swept aside now by all the years I'll continue to grieve his passing and his absence in my life.

As I said I hope I didn't freak you out too badly, but I really wanted to impress on you - and your partner who seems happy to be wearing his blinders - of how important it is to find out your partner's status, just in case! I'll leave it to others to help you with your issues and fears of having sex in your sero-discordant relationship. Granted I had some of those same fears at the first of our relationship but Jim and I got over those fears years and years ago. As we were together through our 40s (and Jim into his early 50s), we had freaking wonderful (and safe) sex nearly every chance we could - and we made sure we had the chance a lot.

if I can be of any support or help at all, you just holler! I'm not always mr. doom-n-gloom. I don't have to always be jumping on you about your partner getting tested LOL I mean, my own partner obviously didn't get tested so how much right do I have to be too bitchy at you? LOL I'm just hoping you find a way to convince your partner it's the wise thing to do (maybe some of what I've written can help with that ) and then hoping that his test will remain negative.

best wishes for the testing and for the sex!
mikie