How I was diagnosed, how I disclosed, and how I met my boyfriend

[Dragonette]

No one told me to get a HIV test. Because I am a woman, I have a good job, I look good, i don't do drugs, I don't fuck around and had good boyfriends with good jobs. I should mention that I used condoms almost all the time, even in long relationships, because I didn't like taking birth control pills, I thought they were not healthy. I knew about HIV. I talked about it, I asked every person I ever slept with about it, was careful not to have sperm in my mouth (sorry if this is too much information). I only had unprotected sex with 3 guys, longterm boyfriends in the last 10 years (and before that was tested and two years celibate, then tested again without having sex). Even with my boyfriends, unprotected sex was rare, because like I said I was not on the pill.

I started having small infections that didn't go away, candida that resisted treatment, sores that didn't heal, bumps on my skin, bleeding gums, nose bleeds, dry skin, ulcers. hairdressers commented that I must be eating poorly, the dental hygenist accused me of neglecting my gums, elthough I floss daily. Small things, nothing serious. This went on for a few years. Got slowly worse. Some syptoms went away, came back, all of a sudden I had all of them, as well as watery diarrearah that went on for months, but by that time I was used to it. I was used to the fatigue, I was used to feeling strange, it became a part of me, I thought that this is just my disposition.

After a long lonely period, and more than a year without sex at all, I met a guy in the Netherlands, fell in love, we planned to move in together, I notified my landlord and flew home to see my family for 2 weeks.

I had a routine blood test at the clinic, as I did every year (at the time, not being insured in the Netherlands), my white cells were even lower, despite a year of taking B12 supplement. The clinic wss packed with sick people, it being january. The nurse, a Russian matron, complained that I have just on entry point. I laughed. "One is enough", I said. In love, glowing, invincible. She shook her head knowingly, "one is NOT enough, you will see one day".

I went to the gynecologist, he knows me since the abortion I had 9 years before (I switched gynecologists after that previous one prescribed a contraception that didn't work and I got pregnant and all he did when I returned was shrug and refer me to an abortion). I told him my candida just doesn't go away despite treatment, he had a look, told me it was fine. I told him, my BF doesn't believe that candida is harmless, is afraid of getting it, can you write me a reference? He laughed. He said, I can write you anything you want, bring it over, I'll sign it. Candida is normal, sometimes goes out of control, can't pass to your BF, but if he wants to use a cream, no harm in that if it makes him feel better. There is nothing wrong with you.  Wanting to surprise my BF, I asked for a Pill prescription, I thought, the candida will clear and we make the love of the century in a month from now. I said, can you give me a reference for a HIV test?

I looked at the reference, I realized that the result would arrive when I'd be back in the Netherlands. I decided to wait and get tested with my BF. We were talking about testing together, making a day of it, it seemed romantic.

My dad is a doctor. He knows the doctor who referred me to the blood tests. She called him, expressed her concerns, said I should retest before I leave, maybe it's a mistake, maybe... she didn't want to say cancer, but it was understood, as they are both doctors.

My dad, although a doctor, actually because he is a doctor, doesn't like to be involved with family health, since for years we have accused him of being a nagging worrywart. He told me I should get retested. I was like, leave me alone, i am going back in 5 days, I can't be bothered, there is nothing wrong with me, I am fine, always fine. I ate raw meat in Burma, I slept in a Thai jungle, I swam in the Mekong, I never bothered taking anti-malarias, I bounced back from dengue fever. Nothing happens to me.

He said, I will do it myself, please (remember we are not talking about HIV at all, just a bunch of counts).

I didn't want to do another test. I was childish, stubborn. The next evening I was in a bar with a friend, I looked in the mirror, I thought, "something is wrong with you, you don't look right". It was not because of the blood results, I didn't even think of that. It was something in my face. Something in how I felt, as though I was not actually there, as though something was happening to me, my face in the mirror looked transparent, not pale, but as though I was somehow not there, I felt like a ghost, like I was slipping away, fading out, I even said to my friend, I don't feel right. Oh, are you tired, catching a flu? No I am not, and I didn't feel sick either (and no, I didn't drink, was driving that night).

I left a note for my dad, next morning, he woke me up at 7.00 to take my blood (I have tears in my eyes as I type this). I was sleepy and grumpy. He was amazingly skilled and gentle (and I have awful veins as i mentioned). As he was about to leave for work, I said, Oh, dad, can you ask them to send it also for HIV?
My dad looked embarassed, as any man would be in such a situation with his daughter I supposed. I swallowed my embarassment, because I knew it would take a long while to short out the Dutch insurance and that I couldn't test with the doctor reference and get the result soon enough. I needed my dad's contacts to get a rapid result.

I didn't ask for HIV because I thought I was positive, I was sure that I wasn't positive. I wasn't nervous, and after my dad left I went back to bed and slept. i woke up at 10.00. My mum told me that my dad called, and that I should call Dr. X after 13.00 and he would have the result. She didn't know what result it was. I wasn't sure if it was the HIV, or all of the results. I was not worried about my health, I did the counts as a courtesy to my dad, I didn't want to leave him worried. I did the HIV as a gift to my boyfriend and to myself.

At 12.00, I got nervous. I have a photo album in my childhood room. I looked at the pictures, me all over the place, friends, boyfriends. I looked at me, I started looking at the guys. I got nervous, but I knew that I had safe sex with them, mostly. I still was nervous. I went downstairs, opened the fridge, got somehow annoyed with my poor mum, couldn't stay at home. Took the keys to her car, drove off. Stopped two minutes later to call and apologize, said I was taking a drive. Called my friend from the bar, but he wasn't home. Drove to his home somehow, not thinking, stopped the car in a bus stop, opposite the beach, dense noontime traffic. January, but a hot day. It was 13.01, called the number.

A secretary. She called him. He took long minutes to arrived. I realized that my heart was thumping, my throat was dry, my body was tense, I feel it now as I type.

His voice on the phone, sounding strange. He called me by a wrong name, and I corrected him, as though that mattered. I could almost count the seconds, and then I heard it.

"Can you come here, we need to do another test?".

I don't remember what I told him. I understood, I tried to beg him to tell me. He refused. I cried, insisted, he refused. he gives me instructions, I ask him to repeat, he repeats, I register nothing. I drive there, not knowing how, not knowing my way, through the narrow streets, the dense traffic, hooting cars, traffic lights, pedestrians crossing everywhere, like a lunatic, I could have had 20 accidents, I was smoking, although my mum doesn't allow smoking in the car, I was shaking, I was praying. I was repeating the same line of a prayer again and again, I am not religious, I don't know any prayers save for this one...

My hands are shaking so much as I type this, I can barely strike the keyboard.

At the entrance of the hospital, cars converge into a line for the security checks. I stop, dazed. I pray. I smoke. I mutter to myself. A taxi driver, fuming at the mouth, gets out of the car and all but hits me, cursing me for falling asleep at the wheel. Bystanders look on, the security guards say nothing. I drive past them, past him. I want to say something, but I can't.

I don't find a parking spot, the hospital is a city within a city, cars, ambulances, visitors, patients in pygamas, families, old people, children, I am alone, I have AIDS, I am a ghost.

I somehow find a spot in a lot behind the hospital, by sheer chance not denting the car. I leave it there and run. I wander around the huge complex, can't find the ward. I go to the information desk, there is a man and a pregnant woman, I want to be them, I want to be anybody on that floor, any dying patient, anyone but me.

The information desk clerk gives me a knowing look, explains, I walk, I reach the place, I am buzzed in.

The doctor is religious. He looks like a Rabbi. He is old. He is not what I expected. A nurse comes, they let me sit in a big arm chair, it is a room with hospital beds. I am in a hospital, I real hospital. there are IVs, there are sheets, there is the smell.... One minute I am in love, I am so happy, I become a woman, finally like all the others. In a second, this. I have crossed over.

They take my blood again, I am shaking like I have never seen anyone shake, shaking like a tree in a storm, I don't know how they manage, they have to grab hold of my arm together while my body just palpitates, it is like epilepsy.

The worst thing is, they won't look me in the eye.

They explain that sometimes there could be a mistake in the lab. Wrong name on the sticker.

But my DAD wrote the sticker!

He doesn't look at me. There are procedures....

I ask him if he believes in miracles, I try to catch his eye. A miracle for me is keeping my boyfriend, that's all I can think about. I don't think about AIDS. I don't think about health. I think, no one will love you again. I think, God hates you.

He says that of course he does, I am making him uncomfortable, he looks like he wants to run out of there.

They ask me if I want to drink. I am collapsed, crying like a child, folded over. They ask me if I want to call someone. I call my boyfriend, but I don't have calls abroad. I call my mum, because I just took off with her car for 3 hours. She sounds normal, not worried at all. In a second I shutter that. I whisper, "mum, I am at the hospital, the result is not good".
"Not good...", she repeats slowly, trying to understand.
"They want to do another test, but the results are not good", I say. I hate myself, I have never ever hated myself so much. I want to die because I am dropping this on her, and I want to die because of the slight relief that flashes for a second.

"I will call dad", she says, "don't worry, he will come. Where are you?"
I tell her. She calls my dad.

The nurse asks me if I want to lie. I lie on one of the beds, a hospital bed. The sheets are cool, she covers me with a blanket, turns off the light. She strokes my back, pulls curtains around the bed, then leaves and closes the door. I am huddled in the bed, my knees against my chest. I am crying. I am alone in a hospital bed in a dark room on the second floor of a huge hospital, I have HIV, the sun is shining outside, people are crowding the streets, and my life is gone, I am nothing, I disappear into a dot, I might even fall asleep, and then my dad enters.

He opens the curtain and bends over and hugs me while I am curled in that bed, I cannot remember my dad hugging me in a bed, not even when I was little, I cannot remember my dad hugging me while I cried. One second I am a woman, going about my business in the big wide world, the next I am this, I have slipped back to a time I can't even remember.
I am so thankful he is there.

They come in the room, whispering, turn on the lights. I am summoned for a Western Blot, the second Eliza was positive, no surprise there.

A WB takes 2 days to get back from the lab, but because I am due to fly back in 3 days (and move in with my boyfriend!!! my head screams. And be finally fucking normal for the first time in my life!!!), they draw blood also for a CD4 count and VL. I don't feel the needle pricks, I don't feel a thing.

I take my dad's mobile and call my boyfriend. I tell him. He stutters. I tell him that the doctor said that he will be fine, we had sex with a condom.

I can't recall this conversation, but it is a lost cause. Perhaps I can't recall it because he is not important anymore, thank God. But at that moment. All I think about is him. I call him again from the car, and my dad stops on the highway. We talk, and all I care is about calming him down. It is not possible, and that day he throws out all my clothes.

When we reach the house, my mum is standing inside, looking lost. We hug in a small, tight circle. We stand like that for a whie, choking, and then we break up. It is as though a bomb was thrown into the house, it is as though someone died.

My dog is still alive, she is 18 and she is blind and deaf and looks like an arthritic black rat, and she still has some blind instinct to stumble out of her basket and approach me. And thank God that she is still there, because all the nights, every night, that I cannot sleep, I go to her basket where she lies, breathing heavily and wrapped in a smelly towel, and I bend over and stroke her and cry.

The next day I go to the hospital with my parents. I haven't slept all night, just chainsmoked. They didn't either. The Western Blot isn't in yet, but the CD4 result is. I have 77. I have 20,000 VL. I am told that I have had HIV for a long long time, I am at the edge of the abyss and the doctor won't let me fly back, but I insist. He gives me prescriptions, I talk about my BF. I am demanding and insistent, obnoxious even. I make him go with me to the roof where there is better mobile reception and call my BF. He tries to calm him down, he tells him I can have healthy children. He tells him he will not have HIV because we were safe, he is sure of it. He invites him to come over and be tested now (it is close to New year and everything is closed in the Netherlands, his doctor told him he would have to wait for weeks). My dad wants to fly my BF over, I spent yesterday's afternoon booking a flight for him, at an exorbitant holiday season, last-minute rate, but he refuses. He refuses to talk to me, but he is happy to talk to a doctor. The doctor tells me, eyes again averted, tthat if my BF will not support me, maybe he doesn't need to be my BF. I vehemently defend him. I am filth, he is my only redepmtion. I fight for my right to be humiliated. I fight to get on a plane. They explain that I might get sick from the combivir and dizzy from the sustiva, that airplanes are not ventilated, that Europe is freezing and I have no health insurance there, that i could catch any number of things, that I am very lucky to be still walking around. They refer me to an eye doctor, to a chest x-ray, to an EKG, to this and that. They get their way. i stay another week.

It is the hardest week of my life so far. I call my boyfriend every day. The calls are worse and worse. He says i should forget him. He says that he loves me, but that it is over. He says that I should call my landlord and tell him I am not leaving after all. He says that I should stay away and take care of my health. I then fly to the Netherlands on a night flight, leaving at 03.00, completely disoriented with Sustiva, sitting next to a couple with a baby, I will never have a baby. The baby sleeps quietly, it looks like an angel. I am one of a kind on this plane. I am not alive. I am a ghost. I am unable to leave Amsterdam airport, I walk around in a daze while the airport fills with the bustle of the mornings's travellers. I cannot get on the train. I cannot leave. I cannot talk to anyone. Finally I call my friend in another town and ask to come over. I take the trains, smoking illegaly on the platforms with teenagers, talking, but dead. She picks me up at her town's station, takes me to her house, her 3 children. I will never have children. I smoke in the garden. The children are unusually quiet and well behaved. They feel something. For a brief moment, I collapse and cry hoarsly on her shoulder while the children look, wide eyed, amazed, innocent. A neighbour is summoned to look after my friend's kids together with her own while my friend takes me on a taxi and the train to my destination. She looks at me, and there is no small talk. It is the heart of suburbia and I am outcast. I have lost all chance of ever even pretending that I could fit in there. My friend brings me to the apartment I was supposed to evacuate. The matress on the floor, the tiny room, the footsteps of the couple upstairs, a coffin for 350 Euro a month. I stay away from work, the city is empty and freezing, I sleep fitfully, I chainsmoke, I call my BF, not referring to him as my ex yet, and he comes around, kisses me with clenched lips, takes off his clothes and some of mine and runs away, disgusted. He screens my calls, he switches off his phone. I walk to his place in the freezing darkness, he doesn't open the door.

I fly home. I chainsmoke and tell my friends. Speak to my brother, who knows from my parents, for the first time. I get retested, my cells are at 130, VL 600. I meet some AIDS activists, I meet a positive guy with lipo and a lust for life, I meet poz men online, and start a witty, uplifting correspondence with a middle aged American. I am scared shitless of going back. I cancel a lot of stuff from work.

I come back 2 weeks later. Again a night flight. Still no insurance. Handback packed full with meds, I am stopped by customs. I tell the young officer I have a chronic disease, he backs off apollogetically.
I go to see an apartment that night, it is freezing, I am tired and jetlagged from a Sustiva night flying. The guy who is leaving appears on his bicycle. We go upstairs to the room. It's in an attic overlooking a canal. The house is shared. I cannot face new people. I cannot live in this buidling occupied by young careless ambitious hopefilled people. I am too tired to leave, so I stay, have a tea, bumm a cigarette. He is Spanish, older than me, big, warm, funny. We don't talk about anything, but we communicate. He makes me call my landlord and tell him I am staying yet another month. He makes it simple. I am scared of my landlord, he told my previous roommate that if she doesn't evaccuate he will put her stuff on the street and change the locks, and while I was gone put a new girl in the apartment. He is a big bully, but the private housing market is tiny and the demand is huge, it is not just a question of money. It is a question of money, willpower and luck, which is not on my side.

I walk the long way back to my room, through the city, past the park. I put my mobile on the desk. The room is dark, the house is empty. There is no one to call. There is nothing to do. No internet. No TV. My hand reaches to the phone. Without thinking, without feeling, I call the Spanish guy. He sounds surprised. I don't know what to say, I don't even know why I called. I hear myself saying: "do you want to go out sometime?".

[Basquo]

Holy s**t!  What a read!  You've candidly recanted your experience, but WHAT HAPPENED NEXT?  You are quite the writer!

[Dragonette]

I can;t write anymore tonight, for one thing I have a deadline tomrrow from work and it is 4:49 A.M and I was supposed to work on it all night, so guess what, a white night, for another, this made me shake and cry like crazy. But I will probabaly write more. Thank you Basquo.

PS Are you Basque? 

[otherplaces]

Definitely a page turner!

Brings back alot of those crazy crazy frightening memories.  I remember just feeling like I'd been nuked in my head.  I would actually visualize a mushroom cloud, constantly, endlessly.

And though, at times, the world seems hell bent to destroy us...it has yet to succeed! 

best,
brian

[xyahka]

Beauty, what a post!! I have to admit... i cried a bit.... i could almost see you writing, thanks for sharing this with us... it made me more human.

you are such a great girl

Juan Carlos

(waiting for the second part!!!)

[Dragonette]

Thanks so much... I corrected a few typos and added some lines, when I was typing I was kind of in a trance. I will write more, I love writing... but now I have to write a frigging report, and the sun is already up, but sometimes it's worth staying up, and it's been years since I saw a sunrise.

Thanks again.... have a great... evening I guess?

[naftalim]

Wow! I am glad that I decided to log on at this time of the night to read this. Though it is a sad story it is still a very human one. I think manhy of us on this site identify with you. All the best.

[sweetasmeli]

My work shift is, as a rule, dull. The day before yesterday antihistamines made me fall asleep twice; yesterday I was bored beyond the ridiculous; today I copied and pasted your post onto my laptop, took it with me, read it and cried. 

Dragonette, I admire your tremendous honesty and courage, as well as your ability to write. And I too, await the next installment with anticipation and (it has to be said) faint trepidation…

With respect
Melia x

[keyite]

Wow, I'm dizzy from trying to keep up - absolutely amazing story - looking forward to the next chapter.

Was wondering which is your native country - Israel?

[Iggy]

I read your post late last night as well as again this morning....and again when I came home from work. Here I am for the fourth time on your thread and I'm no closer to having a clue as to what to say.

I can only repeat what others have already said about your honesty and your ability to write this all so eloquently.  I do know that what I admire most about you so far is your bravery - and that may not seem apparent to yourself - but the bravery I am talking about is your ability to fully feel everything as you experience it. 

My hunch that what has truly gotten many of us reading your post is that some of the things you have done and reactions and emotions that you displayed OUTWARDLY are things many of us could only contemplate internally without ever taking the risks - the risks to face rejection face to face or the risk of letting all guards down and being openly emotionally to all regardless of how messy it might be.

I actually don't know if I'm ready for your part two yet to be honest - I still feel viscerally drained from this first thread.  I am glad you found this site.

[anniebc]

What an amazing post, I have read and re-read and still have no idea how to respond...a simple "thank you for sharing" sounds so weak, but that's all I have..so thank you.

Hugs
Jan

[Robert]

Mesmerizing....fascinating......spellbinding.

At sometime or another I think most of us have experienced these same feelings of fear and bewilderment not knowing what to expect but anticipating the worst. You expose your own frailities and make us feel like they're ours and we keep turning the page, wondering when it will ever stop.

Ay, there's the rub.  It just keeps going and going and going. 

Can't wait for Chapter II.

robert

[Dragonette]

Thanks a lot guys. I kept revising this thing and the latest version is not online. You have to keep digging to find out the truth... it is honest but not 100% honest but part of the HIV journey is that the truth unveils slowly in the stories you tell yourself about who and what you are (that is, the aspects of my life that I choose to accentuate and the aspects that I choose to overshadow b/c they don't fit in with my esteem)

Thanks for letting me dig here  I wrote it in some crazy stint not sleeping for 28 hours and getting massive RSI. I didn't plan to but I am glad it happened.

Take good care.............

[friendlygirl37]

My God!!!  I'm speechless...you are my girl one heck of a writer.  If i were you I would find myself a publishing company and start a career in writing.  Thank You for sharing your story with us.

I truly felt as though I was reading a story in a book, a real page turner.  You do have a story to tell and I do believe people would listen.

[ACinKC]

Welcome to the board Friendlygirl.  You should consider starting a new thread to tell us a little more about you and where we can all say hi.

[Dragonette]

Thanks, I this is one of my dreams actually... I just want to be careful as it takes a lot from me.

Welcome aboard & like AC said, look foward to meetin' & greetin' you

[englishgirl]

wow, you certainly tell a good story, i cant wait for the rest of it! thank you for sharing something so personal with us
xxx

[dixieman]

Excellent!... John

[thunter34]

Hey, dragonette.

I just read through this story.  It's a bit on the long side, so I wasn't able to keep up with all the exact details.  Clarify for me, please.  What was the verdict here?  Are you saying you got HIV through oral or through an abortion mishap?

Apologies for not being able to keep up.