blog 240416 outoftheisolationcell

Out of the isolation cell

I was a very ordinary suburban mum, two kids, the station wagon, and a dog. My husband, Tony and I were diagnosed with HIV on the same day.

I’d been in hospital with an undiagnosed illness in the last trimester of my second pregnancy. Tony was admitted to hospital with pneumonia, around the same time I gave birth. After I gave birth and returned home, I would return to the hospital to visit my husband. His pneumonia wasn’t responding to treatment.

His infectious diseases specialist had been consulting with the doctors on my treatment, so when he saw me in the corridor with our then three-week-old baby, he asked, “What are you doing here?” I said, “I’m here to see my husband.”

The next day when I visited Tony, he said, “I’ve been tested for HIV, and they want to test you as well.” My immediate response was to laugh because I thought we were so far outside any possibility of having HIV.

Two days later, they came to us with the news that we were both HIV positive. Tony was diagnosed with an AIDS defining illness. He was so very ill. We were told he had four T-cells left and we were warned he was about to die. My newborn son’s first Christmas was expected to be his last. The following year he developed mycobacterium avium complex (MAC) and was very ill again.

Our diagnosis was a shock wave to me, it just cut our lives off. Our lives completely changed. We’d made plans for our ordinary life. We weren’t planning grandiose things.

At the time, Tony was an economist, working for Foreign Affairs. He wanted to be a diplomat. We had plans to go overseas. We were talking about our children being educated overseas to pick up a second language. All of that possibility just got chopped off in that instant of our diagnosis. We had to recreate our lives from that moment.

The first thing my husband and I said to each other when we were given the diagnosis was

“We’re not going to blame each other.
There’s no point in trying to say ‘this was you’ or ‘this was me’.
We don’t know. We don’t know. We’ll never know.”

For the next 18 years, we stayed together. We never, ever pointed the finger at each other. Even though we’re no longer together, we’re still friendly.

My immediate focus at the time obviously, was our two small children. Thankfully, after testing they were negative. The baby got quite a few viral illnesses in his first year because I didn’t have enough immunity to pass on to him. He developed viral croup, while Tony was still in hospital with pneumonia.

So I found myself at home alone with a two-and-a-half year old and a 4-week-old baby, sitting on the bathroom floor crying, with a hot shower running to help my baby breathe. That was the start of feeling like I was in an ‘isolation cell’.

Tony was in his own isolation. Between the two of us, we didn’t really talk about it other than just our immediate medical needs. Once we got the new treatments, our health did settle down a lot.

While Tony stopped working, on the surface nothing changed in our lives. Nobody in our lives knew about the HIV, other than immediate family members.

My mother-in-law was great. She was someone who I could openly talk to about anything, however my family were more alarmed. While they were very concerned and supportive, it caused them so much distress that I couldn’t discuss it with them. I definitely got the sense from my three siblings that they did not want me to talk about it. We didn’t tell any extended family, we didn’t tell any friends. My parents were so concerned about anybody in their small rural community finding out, that I had to be super, super careful about what I said.

I can’t remember how we explained why Tony wasn’t working. I can’t even remember that. I can’t remember the lies we told people. That’s how I felt, that I was lying.

I felt I was lying by non-admission, so I deliberately didn’t make new friends, or even close friends. I’ve subconsciously pushed most of my friends away, because I felt every time I saw them, and didn’t tell them something, in a way I was telling a lie, right? I had lots and lots of acquaintances. There were two people during that period who stuck with me, and just went along at my pace. They’re still with me today and I feel I’m very lucky to have them.

I went back into the workforce fairly quickly. I had an opportunity to work with my then step father-in-law in setting up an antiques business. So I took that and did that for the next 14 years, until Tony and I separated and ultimately divorced.

Now as a working sole parent, nothing really changed for me. I was still in my isolation cell, with nobody knowing anything. I felt separated from the world, as if I was no longer a part of the world. I wasn’t part of the world I was in before the diagnosis. That suburban mom of two, with the dog, the station wagon, and the husband. I was no longer part of that life. Something had happened to me, that made my view of that life completely different.

I wasn’t part of a positive community either. We lived in Canberra at the time, but there wasn’t any kind of group for heterosexual people with HIV then. It was all gay men. I didn’t have a role in that community. There was no conversation with me, about me being a part of that community. I felt very isolated from them all.

For the first two years after my diagnosis, I was involved with a small women’s group of five women. They were great. I was meeting with them regularly and I was seeing a counsellor. However, those women moved away, or got sick and passed away, until I didn’t have any contacts like me in that positive community.

The change came about when we decided to tell our children. The youngest would have been 12 or 13 years old. We’d been waiting until he was ready to start high school. Our older son would have been closer to 15 years old. We decided to tell them because we didn’t want one of us to get sick and go into hospital, and they find out that way from strangers. We wanted to tell them ourselves.

We felt they had a level of maturity that they would be able to understand. So we prepared. We both got advice from my counsellor, we had educational materials, we’d really thought it out. We sat down with them and told them. My oldest son said, “So are you going to die?”

We said “no, no, no, we’re both really healthy.” They said ‘okay’, and got up and went to their rooms. After a short time, I saw my oldest son come out of his room, knock on his brother’s door, and go into his room. They shut the door and I guess they had a conversation then. We were left sitting outside. So much for all the worry and prep!

We obviously continued to give them information whenever we had an opportunity. We told them, “it’s up to you who you tell. You need to be aware that not everyone is going to take it well. So be careful. But it is entirely up to you who you tell.”

We didn’t want to say to them, ‘you can’t tell anybody’. So from that moment on, it changed for me and I felt I had less need to keep it hidden now. I still didn’t discuss it with my family, and I would never have said anything that would have hurt my parents.

Around six months later, my oldest son came out to us as gay. When I told my parents, my mother could only say, “how could you say that about your own son?” So from then until her death, things between us were closed.

The real openness for me came once both of my parents had died. I finally decided that’s it. I was done keeping this hidden. This was 2017. That’s when I decided,

‘I don’t need to keep this a secret anymore. I can’t hurt my children, I can’t hurt my parents anymore.

My siblings are living their own lives, it won’t have an impact on them.’

So I started to tell people who I wanted to be friends with. I told my nieces and nephews. They are just so adorable, and loving and supportive.

My sons are proud of me. They’re proud of me for being an advocate whenever I can be. I told the two women who had kept with me and one of them immediately said, ‘Oh! your life is so much more interesting than mine!’ Which is so not true! Bless her! She’s had some struggles of her own.

I started sharing more of my life with my siblings, including a video of me talking about the isolation I had felt. It brought my brother and I closer together – he was very emotional and said he was sorry he wasn’t there for me at the time. I feel very loved by my family.

So from that moment on, it changed. The other thing that changed was that I, around that time, turned 50.

In the very early days, someone had said to me, you’ll be lucky if you see 50. Even though intellectually I knew the medication was better, and I’ve had an undetectable viral load for years, part of my subconscious was obviously still hanging on to that.

I turned 50, and I had nothing, my life was blank again. I hadn’t planned past that point.

So I worked on finding out who I was now. That opened up my life to a whole lot more things. I went through a process of finding my voice, which had been quiet and silent for so long.

The biggest change was in 2022 when I moved to Sydney. Around this time I found Positive Life NSW, and found a community for me where I belonged – my tribe. Since then I have developed more confidence about reaching out and being part of other communities as well. I’m completely out of the isolation cell. It’s a completely different experience. I found so much grief, that I was holding inside me for so long.

After I did the Body Mapping workshop with Positive Life NSW, I took that back to my psychologist, and it gave us more of a direction to work towards. I went and did a heterosexual retreat in June 2023 with Positive Life NSW where I was at just the right point to move forward. I experienced a real emotional release and I spewed my grief out into the garden. Since that moment, I’ve been free of that guilt and grief.

All these positive changes are a kind of journey I’m on. I was at the right point in my life to take on that change that came along, and I’m still there. Still doing little changes. I feel new things are coming along. Yeah, so it’s been a hugely beneficial thing.

If there’s anything I could say to other women who might be diagnosed with HIV, I’d say get in touch with an organisation, straight away. Straight away.

The internet has made things much easier to find things. There is a community out there that you can find. I feel it’s very important to connect with peers living with HIV. Then it’s a shared experience.

Even if you don’t think that you need support. Even if you’re only dipping in and out, or you just talk to someone on the phone occasionally, or attend a Zoom meeting, or just read something in a magazine or on the internet, keep in touch with a community. There’ll be a point when you’re ready to engage. There’s nothing like being with your own community of people.

I’d say that’s for any circumstance. One of the biggest mistakes I made in my life was when I had a stillborn daughter between my two boys. I didn’t go to support groups, I didn’t look for support. I felt like I didn’t want to sit in a room full of people talking about their grief. But that was the biggest mistake I made. It’s contributed to me holding all this stuff in. I realise now what a benefit that could have been for me at the time.

It’s important to find people who share your experiences, and who know they don’t know everything, because we’re all different.

Even though their journey is different, you can sit down and understand each other in a way that people who haven’t got your experience will never be able to understand, no matter how many people they’ve talked to, or how much they’ve read or studied, it will never be the same.

That’s what makes Positive Life NSW so effective and relevant. Knowing that everyone involved is living the same life as you.

There’s a freedom in that.

– Alice

Published in Talkabout #208 March 2024

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