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Author Topic: How can this be happening to me?  (Read 6414 times)

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Offline fallenfromgrace

  • Member
  • Posts: 4
How can this be happening to me?
« on: October 25, 2008, 06:51:24 PM »
I don't really know what to say, I just found out that I am HIV positive this week, I found this website, but was too scared to post right after I registered, I don't know what to do, what to say. I'm so young, so so young. I have my whole life ahead of me, and now, now I don't know what that life will be like - I just don't know. I haven't told my parents, they'll flip! And my friends - I can't tell them either- I'm only 21, most of my friends are highly immature when it comes to things like this. Please, I need some help - my doctor wanted me to talk to someone, but I couldn't - how do I talk to a complete stranger about this face to face? I am so scared, scared and lonely and hurting.

-scared, lonely, and 21

Offline anniebc

  • Member
  • Posts: 6,154
  • AM member since 2003
Re: How can this be happening to me?
« Reply #1 on: October 25, 2008, 07:22:42 PM »

Welcome to the foums.

Reaction to the results is difffernt for everyone, but over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one is going to tell you it's easy, and it's ok to be scared, but don't let it take over your life, stress is a natural emotion it can actually help some of us get through certain situations, but excessive stress can cause you physical symptoms and can damage your immune system further, just find ways to manage any stress you may be feeling, learn to relax and listen to your body.

Along with HIV comes anxiety and one way of tackling this is through information. gaining confidence in yourself and making informed decisions about your future.

Support is very important and you can get this from your Doctor, a qualified ID doctor is the best way to go , I know you are worried about family and friends finding out, see if you can find a family member or a friend that you trust, if not then there are many support organizations out there...just make sure whoever you discuss this with is sympathetic,supporting and  non judgmental about your HIV status.

Most important of all you have to remember that being HIV+ does not top you from being the person you were before your diagnosis.

I'm sure the guys here will give you the support you need for the time being, and help you get through all the emotions you are dealing with right now.

Never knock on deaths door..ring the bell and run..he really hates that.

Offline HereIAm

  • Member
  • Posts: 68
Re: How can this be happening to me?
« Reply #2 on: October 25, 2008, 08:47:33 PM »
Dear Fallenfromgrace:

Welcome to this place of information and help.   These are difficult days, I know, I am living them too.  I am so sorry to hear about your diagnosis. 

Learn about the disease.  Learn about the options you have in treatment.  Stay on top of the disease you have.  Information has always been power for me.  I have found a lot of information and self power here.  You will too.

This is just a disease.  It is a disease like any other disease. 

Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline fallenfromgrace

  • Member
  • Posts: 4
Re: How can this be happening to me?
« Reply #3 on: October 25, 2008, 08:54:38 PM »
I am sorry, you are right, it IS just a disease. Lately, this past week, i have been forgetting that it IS treatable. I did not mean to give a sob story, was just emotional earlier - the only possible way for me to have been infected was when i was gang raped. I know that others can live with this and even thrive - thanks for reminding me, I need to remain grounded during these trying days.


Offline HereIAm

  • Member
  • Posts: 68
Re: How can this be happening to me?
« Reply #4 on: October 25, 2008, 09:06:56 PM »
Dear Amy,

Thanks for writing and posting.  Tell your story.  Do what you need to do.  And, never forget, this is just a disease.  Just a treatable disease.

I am not saying that it is fine to have it.  I wish you and I and all of us didn't have it and have never heard of it.  However, we do, and it is treatable. 

I agree with the other post.  Get a good ID doctor.  I would find one who treats at least 50 other HIV+ folks.  Make a list of questions.  Read the lessons on here.  Monitor your disease.  Take responsibility for your own health and well being.  Know your numbers.  Be empowered!

I have been able to do these things, most of the time.  And, get people around you who are supportive.  Talk about this until you are sick of talking about it.  I tell you these things because these things have helped me.

And, write on here as much as you want/need to.  It has been greatly helpful to me as I am continuing to sort through my own issues.
Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline skeebo1969

  • Member
  • Posts: 5,733
Re: How can this be happening to me?
« Reply #5 on: October 25, 2008, 10:58:18 PM »


       Like the others said educating yourself about this disease will relieve some of the anxiety you are feeling.  I remember my first few weeks after my diagnosis as being filled with anxiety and dispare.  It does get better though trust me on this. 

      Allow yourself time to cope with this before you disclose to anybody.  The first thing I did was tell my sister and now I wish I hadn't, at least not in the first week that is.  I found that not only did I have to grieve about myself but I also had to take on their grief too.  It just made it more difficult.

      You might want to look to see if there are any ASO's in your area that can possibly set you up with a therapist so you can talk about your feelings.  You can also do that freely here if you want. 

I am sorry, you are right, it IS just a disease. Lately, this past week, i have been forgetting that it IS treatable. I did not mean to give a sob story, was just emotional earlier - 

     No need to apologize at all.  Your feelings are not a sob story in the least.  We have all been where you are right now and trust me we understand fully.  If you need to rant, please do so...  If you need to type your feelings with tears in your eyes... tell us.  We know....

   But please...  understand that as time goes on it will become easier for you to deal with.

   There is a whole community here that is ready to embrace your fears and help you through this as best we can.

    Welcome to Aidsmeds by the way.  This place helped me when I was a total mess and I have all the confidence in the world that you will find the same.

    Good luck,

I despise the song Love is in the Air, you should too.

Offline auspoz

  • Member
  • Posts: 176
Re: How can this be happening to me?
« Reply #6 on: October 26, 2008, 12:08:16 AM »
Hi Amy. I'm really sorry to hear about your diagnosis. But I'm really pleased you found your way here to these forums. They are an absolutely wonderful place for information and support.

I was where you are right now in January. I understand where you are coming from, and I know it's hard. At first, nothing anyone said to me made me feel better, and that lasted quite a while. But I'm here to tell you it does get better, even though that's hard to see right now. I had bad anxiety- really really bad like I thought I couldn't deal with. But you know what, I did. And now I'm so so much better. Thankfully, I'm very well right now too, despite a minor cold.

Do you have some support. That's really important. And you may be surprised what people will do if you decide to tell someone one day.

Be kind to yourself, allow yourself time to heal from bad news, and keep coming back here if you like. I found the stories on the forums really helpful, and maybe you can get some comfort knowing that there are people here who are ready to listen and offer advice.

Hang in there. You can do it. And it does get better.


Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: How can this be happening to me?
« Reply #7 on: October 26, 2008, 07:41:57 AM »
Hi Amy, welcome to the forums.

Sweetheart, you haven't  fallen from grace. It's just a virus, not a moral judgement.

You think you were infected during a gang-rape - are you getting help in dealing with being raped? There's no shame in being raped, you know. It's NOT your fault. It's very important that you discuss your feelings about this with an experienced rape counsellor. Rape can be very difficult to deal with, I know, I've been there.

Do your parents know about the rape? If not, please consider at least talking with your mother about it. Chances are that as a woman, she'll be very understanding and supportive. This might also allow you to tell her what the consequences of being raped. You need - and deserve  - some support! 

Hang in there and please, continue to come here for support and information. In time it could help you feel more confident about getting some face-to-face help.

« Last Edit: October 26, 2008, 07:52:03 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BT65

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  • Posts: 10,466
Re: How can this be happening to me?
« Reply #8 on: October 26, 2008, 12:39:46 PM »
Hey Amy,

Welcome to the forums.  I'm sorry to have to say that to any because of the circumstances, but I'm so glad you found us.

I completely agree with Ann about getting counseling for the gang rape.  I went through that (a gang rape) when I was 15.  I never got help at that time, and the actions that came because of the feelings that never got resolved were dire.  Please, please get some help for that.

About telling your parents, well, I don't know them, but mine were supportive (I tested + in 1989).  I had a close relationship with my mum, and that helped.  You may be surprised; they may be totally supportive.  I also encourage you to find the nearest ASO (Aids Service Organization).  They have trained people there who you could talk to and put you in touch with a good therapist and/or support group. 

I also invite you to join myself and other ladies at the "Positive Women" part of the forum, particularly the ladies' thread.  That's where we talk about our daily lives, struggles, victories, and support each other.  We're really a good bunch.

We'll be here.  Please take care of yourself and get some help.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline fallenfromgrace

  • Member
  • Posts: 4
Re: How can this be happening to me?
« Reply #9 on: October 26, 2008, 10:03:47 PM »
thank you for all of your support - it is nice to know that I am not alone in this. I have felt so alone and like I can't do this - thank you so much. I need some advice though - my landlady (former now) found some paperwork on my bed (I left it there, not realising that she would be in my room) regarding the test (I first tested positive through the oral test, and was given a bunch of pamphlets and other materials) and has assumed that I am positive (of course, I am, but I did NOT tell her that!). She has written the following, which was both uninvited, and unwanted! I have left out her name as well as the name of the church that she mentions. Please, how do I handle this?

"If you need any help speaking with your parents, I am willing to get on the phone with you when you manage to get them to a phone for this talk.  I have an idea of strategy for this conversation that you and I can develop together.  If I don't do this with you, maybe someone from the  church will.  I know your parents can get to a phone if needed, and I encourage you to reach out to them.  Your parents will be crushed to know that you are HIV positive, and no matter what, at some point the Holy Spirit will convict them of their responsibility towards you.  That timing is not up to us, but at least you can present yourself to them.


PS:  You made some comment about AIDS and the conversation we had recently where I said it is a homosexual disease.  Like it or not, and the homosexual community has spent great amounts of cash making it seem otherwise, it is a homosexual disease primarily.  It was STARTED by a homosexual act, and even though straight people do get it, they are absolutely the minority.  There are many people who are not homosexual who have died from AIDS, and that is very sad. Actually, the entire situation is sad, that sin of one immoral group should effect so many people around the world.  Amy, I am not blaming you or saying you are homosexual.  I am cautioning you about the political position you have taken because it is a lie of satan to think AIDS is not primarily a function of homosexuality.  Because of you unique physical situation, you are in the blurry area around the homosexual community here in San Francisco.  That is sad, and I am troubled to see you sucked into that hell hole."

Offline skeebo1969

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  • Posts: 5,733
Re: How can this be happening to me?
« Reply #10 on: October 26, 2008, 10:49:04 PM »

   You said former landlady so I am assuming you are already out of her twisted hell hole.  Her comments, stemming from ignorance, are proof that the stigma surrounding HIV are unfortunately alive and kicking....  that letter had to feel like a kick in the gut.

   Don't bother with that right now... focus solely on yourself.  This is one of the reasons I stated in my earlier post that it might be best to talk to someone at the local ASO near you.  This is hard enough to deal with and the last thing you need to hear or read is someone   spewing their self righteous ignorant beliefs.

   She had no business going through your stuff...  To hell with her Amy.

   Please what ever you do... do not for a minute think that this is what your life will be like now.  She was wrong, plain and simple.  I hope you are OK.


I despise the song Love is in the Air, you should too.

Offline BT65

  • Member
  • Posts: 10,466
Re: How can this be happening to me?
« Reply #11 on: October 27, 2008, 01:41:47 PM »

What was she doing in your bedroom?  Well, whatever, I wouldn't even respond to her, especially since she's not your landlord anymore.  The kind of hate that comes from someone like that is best not fed into.  I'm not going to get into what I think about what she said (other than she's wrong), because you need to start taking care of you.  So, my answer is not to even respond. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline lusopt

  • Member
  • Posts: 61
Re: How can this be happening to me?
« Reply #12 on: November 06, 2008, 05:17:05 PM »
Hi... please hang in there, im so scared too i tested + last week also, i know what you are experiencing, i cry all the time, i feel sad, i feel lonly... im not the best person to give you advice, but just wanted to say something so that you know there is someone like you suffering and having the same fear and doubts. You are not lonly, im with you, i think we all are...

Kiss  :-[

15/11/06: HIV-
28/10/08: HIV +
- No Meds -
18/11/08: CD4 -650 (.......)  / -17.500 VL
01/03/09: CD4- 540 (19,6%) / - 2090 VL
17/07/09: CD4 -603 (20,1%) / - 5040 VL
27/10/09: CD4 -627 (21,5%) / - 10.896 VL
25/03/10: CD4 -609 (23,9%) / -11.602 VL
12/09/10: CD4 -555 (........) / - 55.500 VL
21/04/11: CD4 -466 (17%)   / - 50.339 VL
01/10/11: CD4 -375 (19%)   / - 73.058 VL

Started, Epzicom and Sustiva
01/02/12: CD4 -298 (23%)   / - undetectable

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: How can this be happening to me?
« Reply #13 on: November 07, 2008, 09:32:24 AM »
Hi Amy,

Oh Lord I am so sorry you have been lambasted by this poor child of God.  My goodness, ignorance is truly a dangerous enemy.

I come from a very Evangelical family, and have been HIV positive for about 25 years now.  I was in San Francisco when I became HIV+, and my family was so very Christian and helpful to themselves, they actually disowned me.  (In Jesus' name)   :)

When people spew ignorance with their limited knowledge about this disease, the best thing you can do is to let them know you are more knowledgeable than they are.  Globally this disease is a Heterosexual disease, and has been so from the beginning.  That is to say, more Heterosexuals have it than to Homosexuals.  Most of these kinds get all their information from misinformed preachers, and elders of their churches without ever questioning the lies they spew. 

I recommend you go to Project Inform in San Francisco and tell them you are newly infected, and ask them for print material to educate yourself about this disease.  They have been funded to disemenate information and theirs is pretty much the latest.  You can also get it off line, along with all the lessons and information from this site also.  Soon enough you will have knowledge and of course will be able to handle it like all the good women on this site who are some of the most incredible people on the planet. 

Take heart, and please ask one of the moderators on this site if you can change your nickname, because like Ann said, you have not fallen from grace.  God allowed both of us to get this disease for a reason, and I happen to know my reason, now it is time for you to understand yours.  Your first post above tells me loud and clear you are truly the vision of "grace" and for you to think you have fallen is very sad.  You truly are a very graceful person and one with too much heart to have this name.  :) 

Keep up the good fight, and I will be here to answer any questions if you just PM me and let me know of your concerns.

God Bless you Amy.  You are not HIV, it is just a micro organisim that now lives inside your body, along with all the other organisims we are hosts to.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline hotpuppy

  • Member
  • Posts: 555
Re: How can this be happening to me?
« Reply #14 on: November 07, 2008, 10:52:12 PM »
Dear Fallen, and luspot. 

First off, you are still wonderful human beings.  HIV does not change that.  Hateful words do not change that. In fact, nobody but you can change the fact that you are a wonderful, loving, creative, valuable person.  Nobody can take that from you.

Yesterday was my first anniversary of being infected with HIV.  I found out that my viral load is now undetectable.  I had a dinner date with a nice guy I met who spent the night.  :)  <evil grin>  He's also poz, so we have that in common.  It's completely possible for you to find someone to date, to have sex with, to build a relationship with.  HIV does not take this away from you.

With proper diet, exercise, and health care you will live a normal, long life.  This is important.  You can have children, get married, and do everything that everyone else does.

Now for the fun part.  Sometimes people mean well and say stupid things.  When I told my mother she asked if my aids was doing well.  I had to stop and explain that HIV and AIDS were different, but related, just as diabetes and diabetic coma are related but having one doesn't necessarily mean you will get the other. 

HIV for me has caused me to stop taking life for granted and appreciate it more.  I make time to enjoy it and am greatful for what I have.  So many other people never take the time to enjoy life or appreciate it.  When you realize how short and precious life is it changes your outlook and helps you see what is truly valuable. 

At first you will be angry, hurt, ashamed.  This is normal.  HIV has invaded your life, moved in without asking, taken up residence.  You cannot evict it, throw it out, make it leave.  HIV is like a pet.  Except that if you neglect it it will tear the house up.  You must take care not to disturb it. I.e. eat well and watch out for things that could make you sick.  Eventually, you will learn that you have HIV and you are still in control.  As you come to terms with this you can move past HIV.

Yes, you will have people that you tell who cannot handle it.  That is not your problem.  You are not the shallow person, the hateful one, or the stupid one.  Some people may try to pin blame.  Blame is a meaningless exercise.  Blame does not change the past.  I usually feel sorry for those that cannot handle my status.  It's their loss.

Make friends with other HIV positive people.  Seek out social activities.  Go to support groups.  Fallen, check out the women's forums here.  I would encourage you to visit the local HIV clinic.  Not for treatment, although that's a good idea.  I want you to go so you can see that you are not alone.  Everyone else there is just like you, fighting HIV and winning.  Everyone else there is taking steps to make sure they are in control of their life.  It's empowering to see 100's or thousands of other people who are just like you.  To know that you are not alone.

When you go to a social or a support group... it's okay to listen.  You don't have to talk if you aren't ready.  When you are ready you will be comfortable.  In the meanwhile, it's important that you see that others have faced and overcome the same problems you face and will overcome. 

HIV enables us to get past the petty things and I find that my relationships are much deeper than they have ever been. 

Lastly, you must love yourself before anyone else can love you.  Grace is how you carry yourself, how you believe, and how you to choose to be.  You are a smart, wonderful person and we are all here to help.  It helps if you tell yourself it's going to be a great day.  The human mind is extremely powerful and very good at getting what it sets it's eye on.  If you tell yourself "I hope I don't screwup" you will be focused on screwing up, and you'll do exactly that.  Likewise, if you tell yourself "I'm going to have a great day, my interview will go well, school will be productive, work will be fun, and I will have a great date tonite"... you set the stage for your mind to achieve success and it will put all of your considerable talent and brainpower to work making that happen.

You have the power to make today a great day, will you do it?
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline mplsdoubled

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  • Posts: 52
Re: How can this be happening to me?
« Reply #15 on: November 11, 2008, 07:22:52 PM »
Everyone will say, "I can't tell you that it's going to be easy..." but I have to disagree.  It's all about how you handle the situation.  This is no harder than any other situation that anyone else has to deal with in their own lives.

Look...HIV is no longer a death sentence.  It is a "chronic, MANAGABLE disease." 

Like you, I was a mess over a year ago when I tested positive.  It's been an interesting year but here's what I did...

1.  Take control!  Find a doc that you like and respect - fire everyone else who doesn't make you feel good.

2.  Take control!  Listen to your doc, keep  your head up and don't let yourself be a victim.

3.  Take control!  Many of us say that we are "living with HIV."  NO!  When we "live" with something or someone, we live according to their rules and their terms.  Instead, decide that HIV is living with you - on YOUR terms!

4.  Take control!  Get involved.  Meet other's who are in a similar situation but don't let this diagnosis define who you are.

5.  Take control!  LIVE YOUR LIFE!  You are young and you have your whole life ahead of you.  Yes, you may have to go on meds but the meds today are AWESOME!  My viral load is undetectable and my CD4's are over 800.  Part of that is because of my meds but a greater part has been my attitude.

6.  Take control!  You didn't choose this but that doesn't mean you have to let go of any of the dreams, plans or goals you had before.  In fact, if you keep an open mind, you will see that your diagnosis will undoubtedly present situation's and OPPORTUNITIES that you never would have had before.


Much love,


Offline Begud

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Re: How can this be happening to me?
« Reply #16 on: November 12, 2008, 12:44:04 PM »
I agree with Doug above, you need to taken control of your life.  When I was diagnosed I was hurt, I cried the first day but the next day i thought crying wont solve anything.  I needed to get my life back and not be defeated by hiv which I have.  I have been living with hiv for 20 years now, im not on any meds and im quite healthy.   im careful not to reinfect myself, making sure i use condoms everytime i have sex. I believed that hiv is like any other cronic illnesses.  Im fortunate in that me and my family are very close, i told my mum and sisters who are very supportive.  I work as a voluntary worker with an hiv organisation.  I felt it would help me understand the disease more.  I have disclosed my status to a few people i feel comfortable with.  This has really helped me take control of my life as i feel im in a community where i belong.   Dont loss heart u will feel better soon.  Just dont blame urself or anyone about this, what is done is done.  Look at the bright side at least hiv is no longer a death sentence. 


Offline lady89

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  • Posts: 3
Re: How can this be happening to me?
« Reply #17 on: November 15, 2008, 10:08:01 PM »
I have been living with this disease for 19years.Through those years I have been taught many things.Like the way people treat those who are infected,as well as the many of the drug treatments.When I was diagnosed in 1989 I was in the military and a mother of a two year old son.I can remember  I didn't want to fall asleep thinking I wouldn't wake up.After getting educated,I became more confident about telling people.I also learned that it is important to get to know yourself,before you tell anyone.This way it is easier to feel how that person will react.I was discharged from the military with no benefits because when I was told. I punched the officer in the face who told me my news,then told him he is an ass for telling such a tall story to someone.I didn't get a dishonorable discharge I got a general discharge.My son was tested negative and still is HIV negative.I also learned that it is helpful to bring the educational material with when you are going to tell someone you have HIV/AIDS.
Keep your chin up things do get better


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