Newly diagnosed and struggling (sorry about other posts - connection is trippy)

[Lora]

Hello how is everyone?

I was diagnosed last summer after I was attacked and it turned my life upside down.
I have suffered with mental health problems all my life and this came along and sent me spiraling into a bottomless pit. I confided in my manager at work who told everyone so i've been off sick ever since, the reason he told everyone was for their safety - just in case i cut myself, they also want me to wear gloves. I can't bear to go back there.
My relationship with my partner of 2 years has also suffered, he's not interested in me anymore and the two times we have had sex (protected) he ran straight to the shower.

I just feel dirty and am scared to go out and i cant see the point in living any more, I wondered what it was like for everyone else when they first find out - i've never met anyone with HIV and would definately not have any predujice against anyone.

Thanks

[BT65]

Lora,

First of all, welcome to the women's family.  You're most welcome here anytime, with any questions or concerns, or if you just want to talk about your day-to-day happenings, then feel free to post in the ladie's thread part of this women's forum.

Second, I am so sorry to hear about the attack you suffered, and subsequent infection, shame etc.  You didn't deserve that, and I hope you know it certainly wasn't any fault of yours.   What type of job do you do?  I mean, irregardless, your boss should not have told anyone, let alone asking you to wear gloves.  It sounds like he needs some HIV education.  If there is an ASO (Aids service organization) in your area, I would encourage you to get ahold of them, see if they have a testing/prevention department, and if they do, expalin to them the situation and invite them to your job to do some educating.  I'm sorry you're having to face this discrimination at work.  I hope your boss treads very lightly.  If he gets too awful about this singling out with you, you may want to talk to a lawyer. 

So how was it when I tested positive?  Well, that was 21 years ago.  At the time, I was very frightened, because there really was not much hope back then, and almost all the friends I made were dying.  I went through a bad period of wasting (got down to 80 lbs), my t-cells crashed to about 2, and I had Hospice taking care of me, made out a power-of-attorney and will, and just got ready to die. But, obviously I didn't.  I did used to go sit with my friends who were dying, before I went through the wasting, and then after I recovered, and got very close to some people.  I'm very fortunate in the fact that my family never treated me horribly.  Oh, my brother-in-law's sister told my niece not to let her baby around me (and she was studying at the time to be a nurse), but she has since changed her tune, with all the education out there now.  I think at that time, I kind of just put one foot in front of the other, and handled one thing at a time (try not to get overwhelmed).  I had some very, very good friends, which helped also.  And now here I am, still alive, and actually just went back to work full-time after about 16 years of living on Social Security disability.  It's scarey, but it's kind of like a leap of faith.

About your boyfriend.... if he's going to run to the shower after you all have sex, it sounds like he isn't worth your time.  HIV is just a virus, not a moral judgment, and in no way makes you "unclean."  You did, and are doing, nothing wrong.  If he wants to treat you like that, dump his ass.  You don't need people in your life who are going to treat you as less than.  You're still a worthwhile person, and I'm sure you have a lot to offer people. 

I urge you to get some counseling if you're having a very hard time with this.  You owe it to yourself.  Please keep in touch with us, and let us know how you're doing.
  L~
Betty

[Ann]

Hi Lora, welcome to the forums.

Don't worry about your previous multiple threads - I got rid of the extra ones for you last night but I didn't have time to post as I was meeting someone in my local.

I hope you don't mind, but as an administrator/moderator, I can see that you are posting from somewhere in the UK. (don't know exactly where) This is important because what your employers are putting you through is illegal in the UK.

You have rights and have been protected under the Equality Act 2010 (previously called the DDA - Disability Discrimination Act) from the point of diagnosis. It beats the hell out of me why the GUM clinics do not inform us of our rights.

Here are some links so you can learn more about your rights in the UK...

Equality Act 2010

Disability and the Equality Act 2010

Employment rights and the Equality Act 2010

Rights of access to health and social care

You can get help with this from one or more of the hiv organisations in the UK. The first one I would contact is the Terrence Higgins Trust - THT.

There are other service organisations as well, many of them are regional. For example, I belong to an outfit called Sahir House in Liverpool and they take clients from all over the Northwest. (I live in the Isle of Man.) There is another organisation in Manchester but for the life of me I can't recall their name called the George House Trust

Many of these organisation offer counselling and other therapies such as massage. They're definitely worth getting in contact with. If you're having trouble finding one in your area, let me know and I'll see what I can find out from my contacts in Liverpool. If you don't want to say what area you live in on the public forum, feel free to Private Message me. (you won't be able to read or send PMs until you have posted three times)

I was pretty freaked out when I tested positive too - it's a perfectly normal reaction. But try to remember that you are NOT dirty. You're the same person you were before this virus took up residence in your body.

Things can and will get better, it just takes time. Get yourself a good support system - this forum is a good start - and stop beating yourself up. It's only a virus and it does not have to rule your life. You can do all the things you wanted to before diagnosis, including having a family.

Please stay in touch with us. Hang in there, you're going to be ok even if it doesn't seem that way now.

Hugs,
Ann
xxx


edited because I suddenly remembered the name of George House Trust

[Lora]

Hello

Yes i do live in North England and the annoying thing is I work for the National Health Service (only in an office doing computer work) and most NHS employers have policies to protect people with HIV and they all state that they should never tell anyone without my consent, our HR department and occupational health all agreed with my manager to tell all the other managers. It's made it imposible for me to go back.
I will contact the terence higgins trust.

It must have been so difficult 20 years ago when you found out, i understand how much luckier I am today and to live where i can get the tablets on the NHS.
I love my boyfriend and he has been so supportive to me it's just the sex thing which is now none existence.

everything is a bit confusing at the moment and i'm not really sure what i'm doing - i want to run away and change my name.

Thank you for the support
xxx

[Ann]

Lora, the fact that you are employed by the NHS makes it all the more deplorable. They should know better. And it's not "most" NHS employers who have to have policies to protect people with hiv, they are ALL legally bound to have a policy and they're legally bound to abide by it. It's the LAW.

What they did was totally illegal and you should look into taking them to court - or at least a tribunal. Your managers need to learn what the Equality Act means and they need to abide by it. If you are in the Northwest, definitely give Sahir House a call. You could most definitely be in line for some compensation.

Sahir House recently moved from Rodney Street to 151 Dale Street (next to the flyover for the tunnel) 0151 237 3989. Ask for Steve Earle. (he's a very nice man and very helpful too) You can also email them at info@sahir.uk.com

If your partner and you love each other, the "sex thing" should get better in time. All you need to do to protect his hiv negative status is to use condoms. If your virus is undetectable, you're very unlikely to infected him anyway. Oral sex is ok both ways and things like kissing are not risks regardless of where your viral load is at. If you want to know more about what's safe and what isn't, feel free to ask.

[Sweet_C]

Oh Lora, I'm so sorry about your attack and the insensitive way you were treated by your employer.  It's hard enough dealing with the diagnosis without having to deal with all of that.

I tested poz in Sept 2008 and I believe I was infected sometime in July 2008.  I was in for a routine pap and the Dr. discovered I had trich.  I had never had an STD before so I asked to be tested for all STD's, including HIV.  At the time, I was more worried about herpes and the possibility of HIV never even crossed my mind.  When I got my results, my doc told me to make an in person visit to his office.  Even though I knew that meant something was seriously wrong, I still didn't believe it was HIV.  When he told me, I was in complete shock.  Unfortunately, my gynecologist was not up in the latest in HIV, and I left his office thinking I had only 7-10 years left to live and that my dreams of getting married and having children were over.  And oh yeah, I found out I had herpes too, but of course that didn't matter so much to me any more.

Part of the reason I didn't think I could have it was because my bf was a divorced father of three and wasn't promiscuous.  I, like many people, thought that because he didn't fall in any of the risk groups that he couldn't have possibly given it to me.   I went home and told him and I fully thought that he was going to leave me.  At this time, I thought I had possibly given it to him.  I never thought that it was a possibility that he gave it to me, even though I knew that his ex had been unfaithful to him.  The only good thing that came out of me finding out I was poz at the time was that he stuck by me and he made it clear that he wasn't going to leave me.  It isn't often that people get proof positive that someone loves you like that.  He also got tested a few months later and found out he was was also poz.  We got married the next year.  Though aI know realize that he could have been the one to have infected me, I have never wanted to discuss who gave it to who.  The way I see it, that information doesn't change anything and just has the potential for causing problems.

My experience with being diagnosed wasn't as bad because my mother had been diagnosed with stage 4 cancer the month before.  When I left the doctor's office, I feared that she might outlive me and I didn't want her and my dad to be sad while she was fighting for her life.  Because I was so grief stricken at her diagnosis, I didn't reallyhave an opportunity to feel sorry for myself.  I started treatment early, and I felt so thankful that my treatments were painless and for the most part free of side effects.  My mother's treatments, on the other hand, were extremely painful and left her unable to do any of the things she used to.  My mother had no hope after she was given her diagnosis, but I found out I was going to be everything I had wanted to do before my diagnosis, including marriage, kdis, career, etc.  And there is a good chance I will live to see a cure for HIV in my lifetime, which is hope we never were going to be able to have for my mother. 

Things may be tough for you now, but do know that it will get better with time.  I think dealing with your attack and an unsupportive boyfriend might even be harder than dealing with HIV itself.

[Lora]

Thank you for that I will contact them tomorrow, I didn't realise at the time that what they were doing was illegal, I was all over the place and just went with it all. I could never go back.

I do love my boyfriend very much but he won't touch me even though I told him he can't get it - he says he could catch it through cuts in his fingers or the lining of his mouth ( I still give him oral) should I give in and get a good vibrator?

Lora
Xxx

[Lora]

I'm so sorry about your mother,s diagnosis, at first I wished I had cancer instead (foolish I know) now I know there is hope and a really good chance of a cure.

The main thing which I hate especially as I already have mental health problems is the stigma, I hate that people hate me for what I have and treat me like a leper!

Xxx

[Sweet_C]

The stigma is the hardest thing for me to deal with too.  I'm still struggling with it over 2 years after being diagnosed.  Outside of my husband, the only people who know about my status are my doctors.  I hope someday I'll be strong enough to be more open about my status, but for right now I'm just taking things at my own pace.

[BT65]

Stigma sucks, no two ways about it.  I've done public speaking, because I figure the people who matter will stand with me.  Have I ever met hate face-to-face?  Sure, and ignorance.  Years ago, I spoke at Purdue University, to 3 sociology classes.  Before one of the classes, the sociology professor told me about two students of his, who were in the KKK.  He pointed them out when they came in the room, and sat down.  I went and sat by them, until class started.  At the beginning of the class, the professor started talking about HIV/AIDS (remember, back in those days, this meant death), and talked about a speaker he had to share their personal experience.  I looked at the girls, and smiled, not moving, because he hadn't introduced me yet.  They smiled back.  When he introduced me, I got up and started walking to the front of the class to speak, and they were just dumbfounded.  That mde my day.

Back in the day, a lot of people, when they found out I was poz, automatically assumed I was a slut, or IV drug user, both of which I had been in the distant past, many years before my HIV diagnosis, and way before I became infected.  When I clarified to those people that I got it from my first husband, I also made sure to reiterate that had I been infected because of being promiscuous or IV drug user, that didn't mean I should be treated any differently.  People are people.  Anyway, I'm rambling.  But like I said, people who matter will stand by us.  Everyone else can kiss my ass.

I'm not saying that you should run out and announce having HIV to everyone.  It's up to you who you tell and who you don't.  If they are worth being in your life, they won't think twice about supporting you.  The other ones don't matter, and should not be given unnecessary power over our thoughts.  Hang in there!

[Lora]

I am absolutely with you BT65!

At first I was terrified of my mental health diagnosis and told no one, now I tell everyone if the subject comes up and I no longer care what people think! In time I want to be able to say ''I've got HIV, I know someone with diabetes so what?''

Xxx