In this article, we meet Suz who was diagnosed with HIV in the early 2000s. In the interview, Suz shares about living with HIV, the challenges she faced and the way forward to living a full life with HIV.
Right now I am a happy girl of 41 years, living with my parter and two dogs. But Suz has not always been the happy person, there has been a lot of negativity around me. Everything was negative.
I can start by telling you about how I got HIV, which was through a rape that I reported to the police.
When you make a police report for rape, you go through a gynecological examination. Through that, they found out that I had HIV and I got a phone call from the gynecology clinic where they told me that I had to come in to submit more samples when they suspected that I had HIV.
For me, HIV was not something that existed in Sweden, it was something that existed abroad. It does not exist here, what is that? But I had to go the day after the call and take new blood samples. I think it took another two days after that and then I got a phone call – you have HIV. Everything went very fast.
How did you experience the time after you got HIV?
I was 20-21 and lived at home with my parents. I had been raped and they saw that I was not feeling well so they could not really figure out that I also had contracted a disease.
I Just felt god why, and I panicked. I Remember I went to my best friend’s house and told her I had HIV. Then I thought – why do I tell her this, HIV is contagious and I might infect others in every possible way and I know she hugged me and said – “You, we fix this”. And I only have a faint memory of her accompanying me to the doctor on the first visit, where I met a doctor, a counselor and the only thing I remember from that whole conversation was just that – when will I die?
When I came home and looked at my parents, I thought – How do I tell my parents that I have a fatal disease? But somehow I mustered the courage and told them this, and my parents just looked at me and replied – “What the hell are you saying?”
My brother, who is a little more educated, was still shocked, so he just took his keys, got in the car and drove off. And there I stood, and was pronounced dead by my father when he said – “You have one foot in the grave”. I do not remember much more what happened that night but I said at least they should see my doctor so that they get more information.
When we then met the doctor, I remember that my doctor told my parents, she will not die of HIV, there are so many tablets that she no longer gets AIDS. She is at greater risk of dying from cancer or other diseases. But somehow you do not trust it, you had been fed by TV, newspapers, mass media what HIV is.
I do not remember much of the first year, I lived in a slumber. What I can remember is that people were not allowed to touch me because of the rape. If my dad, brother or another man touched me, it disgusted me. When it comes to HIV, people were not allowed to touch my cutlery, my coffee mug, the toothbrush it was to be sprayed off, the toilet seat was also to be sprayed off. I smoked at that time so people were not allowed to touch my cigarette or get the last flare. When I was menstruating, the panties would be plasticized and the sanitary napkins thrown away separately. No one was allowed to touch me!
Where did these extra measures come from?
I was afraid of infecting others, I did not have the knowledge. I was almost paranoid. It was a relief when I moved away from home, I did not have to think about where my coffee mug was, I did not have to sterilize things.
But then I started researching, what is HIV and how does it really transmit. Then I began to realize that I had been exaggerating, people are allowed to drink from my coffee mug, people are allowed to smoke my cigarette. Then another behavior developed, that I could joke. Yes, of course, here you can have my cigarette, but then you also get HIV. It was my way of processing, I joked a lot.
How was the doctor and what was said between you during this time? Did you talk about this?
No, it was mostly how are you doing and this is what your values look like. At that time, you did not go for treatment immediately, you only got it when you were below 300-350. But that was pretty much the only things talked about..
Your friend, did you talk?
No, she could sometimes ask, have you been to your doctor? Yes, and everything is fine? Yes, I answered. Ok – Ok. She said you’re not the disease, you are Suz. Sure, she listened, but we continued to live our lives, but I still lived in some kind of continuous fear. My thoughts were elsewhere.
What was your life like during this time?
Before HIV, I went away, I partyed and went out and about to do stuff. My parents never knew where I was.
Now I found myself just sitting at home. I was afraid to meet new people, I became insecure in myself. I became passive. And people were asking me, where’s that playful Suz we used to know?
Yes, but I’m playful, I said! “But you’re just sitting at home, why dont you go out and do things?” No, it is boring, I thrive here. So I lived in my little bubble.
“It took almost ten years before I started dating”
Guys were not in the picture, I did not want to know anyone. I felt like, who can accept me? Felt I was not ready and it took almost ten years before I started dating. Then when I got into dating, I thought about questions about, how, when and where do I tell you that I have HIV? It’s like not just saying – “Hey, my name is Suz, I have HIV.” I have tried that and a lot of other methods. To tell early, to wait or not to tell at all. You can not decide what is right or wrong.
I know that I met a guy, and I fell head over heels for him! We had been dating for about two months, almost every weekend and I noticed that he also was fond of me. So when do you tell, has it already gone too far, or is it too early? But I decided one night to tell, because he suspected that “well you have been single for 10 years, and why is that”?
My response was that, “I just have not found the right one”. He did not really buy it…
I told him one night at his house and gave the true reason, it’s because I have HIV. He reacted by becoming stiff, looked at me, got up, went to the bathroom and stayed in there for half an hour.
Ah okay, I thought, he’s thinking in there. But out of nowhere he comes out, goes into the hall, takes my shoes, jacket, bag and meets me who is sitting on the sofa while he pushes up all my stuff in the chest, pulls me up from the sofa and throws out a lot of awful words. “Fucking whore, fucking hiv pussy, now you’ve infected me!” Excuse the words, but thats what I was being told.
And I replied with, “what infected you”? We have not even had sex and I just thought that, even if we had, we would have protected ourselves. I just replied, “where did you get it from”? “We have kissed,” he replied.
“But it does not transmit by kissing” I replied.
“I do not believe that,” he replied. And did not want to finish listening. Just opened the door and really threw me out. It was 1-2 at night and I just stood there thinking, “what the fuck” and was so sad. I sat in the car, drove home, put on my pajamas and lay down in bed but could not sleep. Lying there and just crying. Fucking idiot! How stupid are you? I was sad, crying and running across the street to my safety, my friend. She opened, saw me in tears and understood that it had not gone well. I fell asleep in her arms. It’s one of all my dates I’ve been on.
All these prejudices that people have about HIV have done something to me. I did not want to tear up those wounds again. There my brother comes into the picture, who supported me and said, all men are not idiots, you will find someone. And I said to my brother, “you do not know what it’s about, this is about HIV, would you have dared to be with someone who has HIV?”
I tried and tried, and got knocked down every time. But somewhere I felt that, I’ll succeed, I’m worth finding someone. I am worth finding someone who can love me for who I am despite my HIV. And already after a few dates, I just said hell, HIV, back off, this is my life.
Where did you find the energy and courage to continue?
You do not want to live by yourself. The driving force was in wanting a partner. I had HIV, and they are the ones who do not have the knowledge. If they had the knowledge I have, they would have understood that HIV is not that dangerous.
Then when I dated the guy I am with today, I can tell you that we dated for a long time and I understood that he had taken a liking to me. Then I felt really nervous because this was a guy I really wanted to share my life with. I even called my doctor in Kristianstad and consulted, how do I set it up to tell my guy about my HIV, in a nice way, without scaring him? May I say that I can not transmit sexually? Yes, my doctor said.
But I thought, it does not sound good either, how should I present it, how do I say it, what do I say, when do I say it. And then came another thought, can I be thrown out again? Do I want to risk going through that again? A lot went through me and my mind at that time.
I did it then in a slightly ugly way, I think it’s cowardly, but I felt that I went through so much and I can not bear to be thrown out of Malmö and drive to my little village. So I know we talked on the phone and I told him that when you have time, call me. No, but tell me now he said and continued to push on like that. Its make or break, I thought – Well, I have well-treated HIV, I said. What, he replied. I have well-treated HIV, I repeated and had to say it several times before he understood what I meant, and he did not hear well-treated, but only the word HIV. No, this will not work, he began and spun on. And I just thought, no, I do not want to hear this, I have heard everything already, so I just hung up and got pissed. What an incompetent idiot I started swearing.
“Do you want to continue and meet?” I asked.
Then an hour passed and he called again. I thought, what does he want now, I thought. But I answered and was he said “What does well-treated HIV mean?” Ooh, he wants to know more. Then I had to explain that I take tablets that prevent me from sexually transmitting the virus. “Oh shit, so you’re healthy?” He replied. “So, no, you can never get clinically disease free, but you can keep it in check so well that they do not find the virus,” I replied.
“Oh ok” he said. “Do you want to continue and meet and so on?” I asked.
“Well, just come on by then,” he said then.
Is he planning to abuse me or murder me or something? But I thought he seemed pretty ok anyway, so when we met again he had read up a bit. Then we talked about it and we continued dating, for a long time, before he decided it would be us. He himself had called the infection clinic in Malmö and the medical hotline 1177 and asked, taken steps to become more knowledgable. He received the same answer in all places, that as long as she takes care of her medication, you will never be infected. He told me that as long as you take care of it, I will trust you. So somewhere out there there is hope!
What would you say to someone who was new to HIV?
The question is how receptive someone is. I know how receptive I was in the beginning. I was not receptive at all. So it all depends on where they are. If someone is far down at the bottom, you can not just say whatever. For me it was “you do not know me, you do not know who I am or what I have been through”. So I believe you have to try to ask, how far have you come? Have you accepted? Do you understand? You have to start carefully. But then show that there is hope, of course the road can be long and you will face adversity. Then the question is, how do you handle your adversity. Do you lie down and cry or do you hop on the bike and ride on?
What do you think is important to overcome adversity?
Set small goals. I have had various small goals. The hardest part has probably been to love myself, to accept myself. Because you can not love someone else before you love yourself. So for me it was hard to accept that I have HIV. I will not say that I have adapted my life to HIV, but still do it in some way, at certain points. The mistake I made was that I paused a lot in my life, try to live anyway, not to pause too much. Find yourself and start loving yourself.