When you first get diagnosed they talk to you about telling people your HIV positive. They call it disclosure, disclosing your status to someone. I have and still find the term to be very formal. I generally just say telling people. I personally have had very positive experiences when telling people. Despite what I thought people reactions were going to be.
I’ve already told you about the first people I told. D, immediately as I knew he was the one I had contracted it from. Then my friend, A. After that it all sort of came out in dribs and drabs. D told some of his family, they knew he was seeing me questioned him about it. He shouldn’t have done that. Not without my permission. I didn’t really think anything of it at the time, but now I think it would’ve been nice to have some control over that.
They tell you that by law you are not legally obligated to tell anyone about your status. No one has to know. With one exception. You should disclose your HIV status to someone you are having condomless sex with before the sex (or if the condom breaks) and even then that is only if you are not on medication and your viral load is not undetectable.
You also are protected by law if someone you tell, tells someone else your status. It is against the law for anyone to disclose your HIV status to anyone else. That being said, people do it. No one really reports it. I’ve had incidents described to me where is has been passed around at work when someone told their boss. But they’re too scared to do anything about it.
The third person I remember telling was one of my best friends (B). B is a Doctor and I had known her since childhood. We live in different cities and met up in our home town. I had lost an astonishing amount of weight and could barely walk because of breathlessness brought on by the complete lack of nutrients. B was extremely supportive and talked me through a lot. She said she remembered from her training her lecturer saying he would rather have to live with HIV than with Diabetes in terms of the impact it has on your health. It was the grounded knowledge from a friend I needed to hear.
The fourth person was another best friend (C). I had known C from my home town also. I have always looked up to C, she has so many qualities that I aspire to. I felt I couldn’t tell her, I was ashamed of myself. I was filled with fear that her opinion of me would change, even though as soon as I told her I realised how silly that fear was. She has never given me any reason to doubt her. But I was filled with fear about everything then. As I previously mentioned I was very ill after I had been diagnosed. This did not go unnoticed. C was very worried about me, so much so on days when she couldn’t visit she had her husband come check on me and give me some ‘complan’ packet meals to help me with my energy. Unbeknown to me she had called B and asked for my Mum’s number to talk to my Mum about me. It has never ceased to amaze me how my friends noticed me changing and just how much they cared and worried. It chokes me up now to think about it.
I told her and explained everything, she was extremely understanding. Within a few weeks I said they could each tell their respective husbands as well if they wanted to. Then I didn’t tell anyone for a while, even though I continued to lose weight and be ill, I just said it was a bowel condition.
In February after my diagnosis I had a mini breakdown. I was back to crying all the time and could barely get out of bed. I was still having odd bowel movements, my hair was still falling out and my mouth was full of ulcers. It had gone on too long. I was so tired.
I called my boss after two days of not going into work, I was in floods of tears and she said she was coming over to my house there and then to see what had got me so upset I could barely speak. I told her and she talked me into telling my parents by simply saying “what if this had happened to your daughter and she didn’t tell you because she was too ashamed?”. That cemented it for me. I would never want there to be something so big in my daughter’s life that she felt like she couldn’t tell me about it. So I planned to disclose to my parents.
Telling my parents was a massive deal. I had said at the start of my counselling that I would never, ever, under any circumstance tell my parents what had happened. I was adamant. Why? Because we didn’t talk about sex, we didn’t talk about the concept of casual sex. I felt they wouldn’t understand, they had been married 35 years. I felt they would think I was stupid for being so careless and they would go cold towards me. Not cut me out completely, but that things would change between us. I was completely wrong as it turns out.
I was visiting my parents with my daughter and on the first night I planned to tell them as soon as she had gone to bed. As the clock ticked closer and closer to the time I felt sick. My stomach was in knots and I was visibly nervous. My mum noticed and asked me what was wrong several times. I shrugged it off.
Once she was down I sat them in the living room and told them, with a shaking voice and tears running down my face I told them pretty much everything. I didn’t disclose that D was the one I had contracted it from. I was still in a relationship with him at the time and although I had never felt any anger towards him about it, I didn’t want them to see or treat him differently because of it. I told them he was HIV positive and we had met pretty much straight after I’d had been diagnosed. My mum just said ‘why didn’t you tell us? Dad was a little quiet. They asked some questions, I cried and my mum cried a bit. She was mainly upset that I hadn’t told her. Dad began to ask lots of questions about health related matters and I stopped shaking. Then everything was normal again. I felt like a massive weight had been lifted and it was only after then that I really began to come to terms with my diagnosis.
I had a negative experience telling my ex-husband. I didn’t really want to tell him, I felt I was cajoled into it. He had seen something on Instagram that D had posted about weed and didn’t like it and didn’t understand. My daughter was staying with him that night and he was demanding to know what was going on and why was I so different and he was making threats about not letting me have my daughter back until he knew what was going on. I was terrified he would have some sort of power over me regarding me, endangering my daughter by having HIV, some loophole I’d missed. So I met up with him and told him. He was shocked and surprised and said that it had never crossed his mind that that was what was going on. He told me that he had slept with quite a few people after we split up and not used protection. I said I hoped he’d been tested and was luckier than me.
Now I’ll tell anyone about my status. There are not many people who don’t know about me, not in my immediate friend group anyway. I have no problem telling people in any situation. Except potential sexual partners.
There are two people so far I have told about my status who I was hoping to, or have been sexually involved with. Both off tinder the dating app. The first turned out to be a Dr and not only a regular Dr but a specialist in this area (what are the chances!) and the other was just a man I met who I chose to tell my status before meeting him. I’d had a few bad days and had been avoiding talking about it then I thought ‘fuck it, what’s the worst that can happen?’ Both were caring and understanding one had a lot more knowledge than the other (I’ll let you guess which!) but both accepted me. I wish I hadn’t been too wrapped up in D at the time to get to know the first man better. There could’ve potentially been a nice relationship there. But I try not to think about that. The second I still see and I will write one of my sexual related posts about him another time.
I hope that when I choose to tell my next long term partner that I am accepted as fully as all of my friends and family have. I do wonder if some of the people I’m not so close to talk about me behind my back about it in a negative way (my ex-husband for example) then I think people must have more important things to think about and that it doesn’t even enter their thoughts.
My fears for the future involve telling a partner I have already slept with about my status. For example if things were looking to become serious with someone, will they reject me simply because ‘I should have told them from the start’? I don’t want to tell every single person I go on a date with because I don’t want that being the thing they take home with them and remember about me. I don’t want my HIV to be the thing that surrounds the start of our relationship. In an ideal world I’d like to be with someone that already knows before we get romantically involved, someone I’m friends with or work with and just knows already.
I fear about my daughter rejecting me when she grows up. I haven’t specifically told her (she’s too young!) she’s asked what the pill I take in the morning is for, I just say to stop me from getting poorly. She accepts that because she sees her grandparents and Dad do the same, I’m no different in her eyes. But everyone has teenage years! Hopefully I will have taught her well and she will have a full understanding of what HIV is so it won’t ever be a big deal to her. As with most things, only time will tell.
~If you have any questions about this post or any post I’ve written please don’t hesitate to comment and ask.