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Family and Friends >> My Loved One Has HIV/AIDS

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alwaysworried
Newbie

Reged: 01/18/14
Posts: 1
why is there no support for the supportive
      #274825 - 01/18/14 01:00 PM

I am 28 years old. I have lived with my boyfriend for almost 8 years. He was diagnosed 2 years ago with AIDS and we almost lost him. When the doctor said those words it hit me like a ton of bricks. Though I was still very worried about his health it's not like cancer this was now something I could have too.
We were all very relieved when I tested negative and all of my tests since then were negative. When I was on the way to get tested I thought if it is negative I will go, but they guy testing me said "well it's not like you are going to leave him that would be terrible" Which made me stay.
Well, a little background, he was being terrible and I was planning to leave before he got sick. Then I thought I will stay with him while he is in the hospital and then I am out, and then I learned this and I thought well now I have to leave. However, when we got home he was different. Like he was in the beginning. We didn't have any sexual contact for 9 months because we were both so scared. Then the first time was....terrible.
Now things are good in bed again. The problem is that I am 28 with no kids. There is "sperm washing", invetro, and adoption, but all of that cost tons of money. I just want to have a baby the normal way. Also, it's so hard because he is not doing well, and people don't understand that not only am I worried about his death and spend a lot of time taking care of him, I also worry about all the other things that people in mixed status relationships worry about.
Then, there are the worried that make you feel like you are the worse person ever; what is we are riding together in a car and it wrecks? when I move on how do you tell your new partner? How do you deal with the tug of war of wanting it to be over and wanting him to live forever?
These aren't things you can talk about with people you know. He gets some help from AIDS organizations, but to qualify he has to go to group meetings similar to AA. He also has a social worker and he can get free therapy. Where is our therapy?!? I need to talk.
The worst part about it is that he NEVER wants to talk about it. He says "I'm dying I have AIDS it sucks what else can I say" When they told him in the hospital he said "OK" it was so matter of fact I thought it would take awhile. 2 years later it's the same. When I try to talk about it he brushes it off, when I cry he says I'm crazy. He says he doesn't say a word at group why doesn't he seem to care?!?
Have you found resources for the ones who love someone with HIV? How has your partner handled it? Does anyone seek counseling? Is there anyone else who sometimes thinks about shallow selfish things? Do you also wonder when you get the flu if this will be the time it's not the flu?

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mark4586lopez
Newbie

Reged: 08/31/13
Posts: 23
Re: why is there no support for the supportive new
      #274836 - 01/19/14 10:53 AM

You are the sweetest. I hope someday I can find someone like you who would be happily accept me of my condition. I understand how your boyfriend feels. But i'd say, if he's been positive for two years now, he should have adjusted or accepted his condition. Though there are really those who take a while for them to accept it. Let him realize of the good things of being positive. If he can't realize it, you shouldn't stress yourself much. I don't know of any support group for the supportive, but I know you need it.

I ain't good in giving advice, but in any case you need someone to talk to, I will listen.. l

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1732
Loc: Jersey Shore
Re: why is there no support for the supportive new
      #274858 - 01/20/14 11:09 AM

I've read and re-read your posting and am trying to see the best ways to respond. I know it's not an easy situation that your in. And it wasn't an easy situation before the 'offocial" diagnosis. Now remmber anything I say is just food for thought, I cannot tell you what or how to do something, I can only offer different ways to look at a situation. Now with that being said first , I feel that it is best that we talk privately. I do alot of one to one discussions and have been told I have pretty good insight. So I will be reaching out to you first and then we can go from there if you still want to talk.

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lilfshrmn
Member

Reged: 03/07/13
Posts: 47
Loc: SE US
Re: why is there no support for the supportive new
      #274863 - 01/20/14 07:17 PM

Infected one here. I have received tremendous support from my family, friends, and loved ones. I also attend 12 step meetings for addiction. I too have found there virtually no support for my loved ones. Notwithstanding professional counseling there are absolutely no support groups or resources for my family members here in Northwest Florida. May I recommend that you contact River. She has reached out to you. Take her up on the offer. She has the experience, strength and has inspired hope in me - Both public and private.
God bless you for what you are doing for your loved one.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1732
Loc: Jersey Shore
Re: why is there no support for the supportive new
      #274877 - 01/21/14 09:01 AM

Why thank you for your encouraging words my friend. It means alot to me knowing that I can make a difference in someones life. Your words have actually encouraged me. Even encouragers need encouragement at times. Thank you again .

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anotherday
Moderator

Reged: 05/15/13
Posts: 369
Loc: Alberta, Canada
Re: why is there no support for the supportive new
      #275027 - 01/25/14 01:30 PM

I've read over this post a number of times and each time came to the same conclusion, the lack of communication! alwaysworried, you first mention that your intention pre-HIV was to leave the relationship, but then diagnosis day and you decided to stay. As I have mentioned to many people in turmoil relationships, first if it's not working as a relationship, why not a friendship ... then if the friendship doesn't work, it's just two ships passing in the night!

The communication comes in with you and your bf, you need to talk, about your feelings and his feelings. You cannot build a relationship by feeling sorry for someone with HIV (or any medical condition), you cannot build a relationship based on caring for that person (do you want to be a nurse and this fills some kind of whim), you need to assess the relationship, the foundation and stability! Communication!

HIV can and will change a persons character, some people will close it off from their daily existance in an effort to "know they have it but not deal with it", some will be all out raising their HIV flags and embracing it, some people will withdraw and brood about it and others will embrace and make it part of their lives. From what you write your bf has kind of shut it off, he knows he has it but really doesn't want to have to discuss it, he should however discuss it with you if you are pursuing a relationship. Again communication!

As for a group, I know our local organization has a drop in group for family members to discuss living with someone who has HIV, check your local HIV organizations, they don't advertise it but they can be a great resourse for people in your situation. If they don't have it, suggest they get going on it because they are missing a valuable segment to what they are offering!

As for kids, your young, give that time ... you listed off some great options and yes money falls into play. Adoption is fantastic but alot of jurisdications will frown upon adoptive parents with "illness" in the family let it be HIV, cancer, diabetes ... they still tend to live in the "dark ages". Again though, you want a baby and you started your post in saying you were ready to leave the relationship before HIV came to stay! Communication!

You need to take HIV out the equation, you need to sit your bf down and talk about you as a couple, will that work, how will it work ... then add the long term caring for HIV in the ralationship, how will that work ... then finding a support network for both of you, to be able to openly talk about HIV in your lives, they are out there, if you can't find one, like I said create one (it could benefit alot of others when you ground break something so important) ... finally when all of this is stable and ready, work on the family, kids, pets and the white picket fence!

If it's not going to work as a relationship, make it work as a friendship, you had that from the beginning ... if the relationship didn't come together, find someone else and be mature about it, to know you might have the best friend in the world sitting right across the table from you!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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RunningScared
Newbie

Reged: 06/21/09
Posts: 9
Re: why is there no support for the supportive new
      #275352 - 02/09/14 09:10 PM

My husband is positive, I remain negative. We had our first child about a year ago, sperm washing and IVF. It's tough for me because only our parents know his status - he refuses to tell anyone else and I respect that, although don't always agree with it, but know that stigma still largely exisits. So I have a very limited group to lean on when things get tough. Bur our beautiful baby has brought us so much joy, that when I look at her the other stuff seems less important.

If a familly is what you want then you should pursue that - you control your destiny, not this disease.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1732
Loc: Jersey Shore
Re: why is there no support for the supportive new
      #275360 - 02/10/14 09:23 AM

Congratulations on your new family member ! Things are so different now from when I was pregnate 21 years ago. You are blest !

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partnerofpos
Newbie

Reged: 02/19/14
Posts: 2
Re: why is there no support for the supportive new
      #275465 - 02/19/14 01:08 AM

Hi, I also have a limited number of people I can share with about my situation. My husband is positive and I am negative. Our son is 11 and negative. The good news is that the challenge of living with HIV for the last 6 years has made our family more loving, flexible and connected. I say that with acknowledging all the fear, frustration, freaking out and the other f***ing things I never thought I could handle.

I find there is not a lot of info and communication about being a co-parent with someone living with HIV. As you mention, the partner's decision about HIV disclosure impacts the family support and connections. Also, planning for insurance, childcare, housing, etc. get more complicated when adding children with a pos/neg partnership. For example: our medical insurance has often been separate plans with separate companies or agencies, and each has changed about 4-5 times in the last 5 years.

I live in a rural area, and the closest HIV support is 2 hours away. I find my support piecemeal; various friends and family know parts of what I deal with. Like, who do you tell, "I just went and got my somewhat annual HIV test today and I'm still negative.?" I'm wanting to start reaching out more about my experience, so here goes. Feel free to private message me if you want to.

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jamieharris
Newbie

Reged: 06/04/14
Posts: 7
Re: why is there no support for the supportive new
      #276515 - 06/05/14 10:54 AM

So sorry to hear that. Hope it all gets better soon for both of you. He has just blocked it out of his mind and is too scared to accept it and talk about it. Hope all goes well from here.

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