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anonymousgrrl3
New User

Reged: 10/25/10
Posts: 8
Loc: maine
newbie needs a friend
      #252697 - 10/25/10 12:25 PM

i have been aware of my positive status for 2 years now. it is just as horrible every morning when i wake up as it was in the first 30 seconds after the doctor told me. i have been in therapy for a year now, getting nowhere. My significant other finally got tested and he is also positive. every time i look at him i feel like i killed him. i have told two of my family, my mother and grandmother, and neither one was supportive. i have regretted telling them every time i speak to them. i have been to afraid to go to a support group in my area.. it took me months to be able to go to my doctor without a disguise on. i am really struggling. i am on meds, and i feel like they are dictating my life now. i feel like i see the world through HIV tinted glasses, and i want to feel human again. any advice would be appreciated. i cannot discuss HIV with my partner, it is too painful.

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bartlebyAdministrator
Veteran

Reged: 01/19/10
Posts: 660
Re: newbie needs a friend new
      #252700 - 10/25/10 02:15 PM

it's a shame your mother and grandmother can't be more supportive. can you tell us where you're from? there's still so much stigma and shame attached to HIV. but you are not alone. I'm assuming that your family is relatively uninformed about HIV. My advice to you is to educate yourself as much as you can about HIV, so that you can teach others who may be frightened by your status. This is the best way to fight stigma, so that they know there's nothing to be afraid of and so that you know there's nothing to be ashamed of!

This is a great article about disclosure that Vanessa Johnson wrote. Have a look!

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Bartleby at The Body
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anonymousgrrl3
New User

Reged: 10/25/10
Posts: 8
Loc: maine
Re: newbie needs a friend new
      #252701 - 10/25/10 02:29 PM

thank you for responding. i live in portland, maine. i believe there are lots of resources in my area for people with HIV, i have just been too ashamed to seek them out. my mother is a nurse. Supposedly she knows more about the disease than i do. she feels it is my just desserts for dating a black man. my grandmother thought it meant i was gay. she knows nothing. she wanted to start planning my funeral when i told her. i am really trying here, to come to terms with this, to get out from under it. i have a lot of stereotypes and wrong ideas about HIV myself, and they are really hard to get past.. every moment is a struggle.. and i keep going, because, well, what else can i do? i tried when i first found out to just roll over and die. but i didn't die. so therfore i must live.

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bartlebyAdministrator
Veteran

Reged: 01/19/10
Posts: 660
Re: newbie needs a friend new
      #252702 - 10/25/10 02:59 PM

if your mother is a nurse and knows about HIV, then she should be more understanding and less racist.

you are not going to die just yet! not with proper treatment and care. you will be fine. i know it's rough right now, but if your family doesn't come around, you have to get away from them until they understand.

as for learning about HIV, it is not a black or gay disease. and you should not be ashamed! now go see the HIV organizations around you.

also if you haven't already, peruse our Just Diagnosed Resource Center.

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DJones
Member

Reged: 04/02/09
Posts: 84
Loc: Milwaukee Wisconsin
Re: newbie needs a friend new
      #252798 - 10/28/10 04:32 PM

Hello
It was interesting to read your post since I was diagnosed almost 2 years ago, January 2009. I had a real rough time for the first 6 months. I then slowly got a bit better mentally. I was in therapy through Milwaukee's ARCW until last April when I felt strong enough to handle the daily 'little voice' telling me I am HIV+. Today I made an appointment again to go back for more counseling. I feel I am on another downward slope. Every day I hear that little voice tell me I am HIV+ and it really starts to pull one down. I can tell you the best thing you can do for yourself is get into some counseling or a group type support. It made the difference for me. I have met some of the best people ever in the last 2 years, people I would be honored to call my best friends. Stay strong and know you are not alone and that your family is not your only family. Family can be what you make them. I get more support from my 'made' family than my biological family. Sad but true. I started a blog the day I found out I was HIV+ and had AIDS. I post almost daily and if you read back to January 7th 2009 to today you can see what I have gone through daily. I am very honest with what is going on in my life. I would also be willing to talk via the phone or email if you need someone to talk with or just listen. My blog link is below this post, and I just won the 2010 AIDS blog award. Stay strong and reach out for your own sanity and mental health.

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http://daveslifelivingwithhiv.blogspot.com/

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iam1
Regular

Reged: 06/17/09
Posts: 174
Loc: Georgia
Re: newbie needs a friend new
      #252808 - 10/28/10 09:41 PM

Look at it this way - if you think you still need that disguise to go to the doctor this is the perfect time of the year to buy it without getting more strange looks.

I'm going to poke fun at you. For this I apologize. Sort of. I try to remember back when I first found out I was HIV+. I think it was back when I had a dinosaur for a pet. I've been HIV+ for more than 20 years, and let me tell you that you will never completely get through the initial fright/shock. It does lessen over time, but some mornings you'll wake up feeling good and suddenly remember - you're mortal! You are going to die!

Like was previously said - educate! Part of what scares people so much about this disease is the lack of knowledge. If people ever bothered to get off their big asses and check out this website for a half hour a week they would get some smarts. They'd learn about this disease, and suddenly it wouldn't seem so scary.

I'm sorry your mother, the nurse, is having issues with this disease. But, she's only human (also sorry to be the one to have to tell you that). She needs to educate herself the same as everybody else. But, some people are so determined that they KNOW everything they'll ever need to know, so they don't bother learning more. Chances are that beneath that somewhat gruff exterior of your mother she's probably frightened that you're going to die. (Did noone ever tell mothers that the only guarantee in life is death?) Give her time to adjust. It may take months. It may take years. The same with your grandmother. When you go to the doctor (in disguise) pick up some pamplets about HIV. They have them for people who are HIV+. They also have them for people who know others who are HIV+. For family and caregivers. Leave them where either your mother and/or grandmother can see them to read. Perhaps taping them to the front door isn't the best option.

What are we going to do with you and your therapist? I'd suggest coming to terms with the fact that you have a disease. Not a death sentance. Only a disease. One that is treatable with many different medications. Stand in front of the mirror, look at yourself, and say "I have HIV!" (I'd suggest doing this in private. You'll get strange looks from others whenever you talk to yourself.) When you can do that and still face yourself without crying you will have passed one hurdle.

Keep up to date about where the support group meets. I think one day (hopefully soon) you will be going.

And, CONGRATS on taking your meds! Don't miss doses. HIV meds are not like aspirin that you only take when you feel bad. If they are difficult to take because of the time when you need to take them or food restrictions/requirements talk with your doctor. He may be able to change your meds to a regimine that is easier on your scheduale. Or, the meds you're on may be what is best for you, and you'll just have to learn to live with what you've got. It does get easier.

As for your partner - would it be possible for the two of you to go to your therapist together? Not everytime, but for one or two (or three hundred and seventyeight) sessions. Discussions are normally two way talks. If your not talking with him I'm going to go out on a limb here and assume that he's not talking with you, either. It's going to fester in each of you until it explodes and you have a knockdown, dragout bitch fight. And, not just one, but a huge one initially followed by several aftershocks.

What can you do to feel human again? Give birth to that alien growing in your stomach Sigorney! Seriously, the best thing you can do is to live. Try to go about what would be your normal day-to-day activities. If need be create some normal day-to-day activities. Get up in the morning. Have a cup of coffee. Go to work. Come home from work. Fix dinner. Clean the house/apartment. Watch bad television. Go to bed. Yes, I forsee you becoming yet another cog in the wheel of life. Not that you'll have a life to speak of, but you'll be just like everyone else.

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anonymousgrrl3
New User

Reged: 10/25/10
Posts: 8
Loc: maine
Re: newbie needs a friend new
      #252809 - 10/28/10 09:52 PM

thank you so much for your response.. you have no idea how helpful you are.i appreciate your ..eh-hem.. humor, and your frankness.i have, in fact, said that to myself in a mirror. and i did cry. i can intellectualy understand this beinga manageable disease. however, emotionally, i feel like i am lightyears away from my peers now. i am dilligent with my meds. they are brutal.. i tried atripla first, i keep reading on here how easy it is for people... i thought it was killing me. now i take 4 pills a day, they are huge (whats the deal with that anyway??).. i am anal about doing it on time, every time.. it is a never ending reminder that i am not normal anymore. as far as me and my partner.. he has a few times tried to broach the subject with me.. i just find myself overcome with guilt, and i cant handle it. he has been mostly supportive to me.. but we are very different and my communication skills(?) or abilities have shrivelled right to nothing.. i have a counselor who works with all HIV clients.. she is OK to talk to.. but i never feel any better at all.. i am frustrated with this being compared to diabetes.. i know about 30 people with diabetes, none of them hide it, they dont have to, no one steps back from a person with diabetes.. no one looks at them like "you're either a slut or a junkie" .. anyways, am sooooo thankful for a place to speak freely like this.. you have no idea.. i need these conenctions..

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alive2
Regular

Reged: 03/08/07
Posts: 342
Re: newbie needs a friend new
      #252845 - 11/01/10 01:30 AM

talking and accepting is the first things you need to do.telling people for me really isnt an option. my wife, and oldest daughter(15) know my status, other than medical staff, thats it. i know how you feel in the sence of seclusion and fear, been there, im getting at ease with myself, but still not going to blab it out all over the place, as im sure you feel like i do about the stigma, at least thats what i take from the 2 posts i read of yours.
even though your partner is now tested theres no telling its your fault, because it takes 2 to tango. dont feel like its your fault, accept what you have and thats a partner who is with you and not leaving you because of hiv. send me a message if you want to talk i will listen.take care

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