Committed to her community services work and maintaining family life, Dianne’s diagnosis came late in her journey. She had been chronically ill for approximately eight months and, after having a grand mal seizure, was taken to hospital experiencing memory loss.

Doctors did a brain scan and diagnosed her with five brain tumours and secondary brain cancer. Within four days, she was operated on to remove what they could; however, what they found in that operation was a significantly compromised immune system and toxoplasmosis on the brain.

“I remember being in Recovery and the medical team started asking questions about previous illnesses I’d experienced,” Dianne explains.

“By this point, I was six months into some of the most horrible illnesses – fungal infections so bad I was losing toenails and a debilitating cough, which I eventually understood to be pneumocystis phenomena (PCP).”

Dianne had been doing her best to self-manage these illnesses: going to her GP as needed, taking sick leave and persevering, hoping to get on top of them.

“While I was in hospital, I started to understand that the doctors were recognising each of these conditions as AIDS-defining illnesses,” she recalls.

A test and treatment offered Dianne a lifeline.

A few days later, while still recovering from surgery in the Neurology Ward, she was visited by a specialist and a social worker.

She says: “They were clearly anxious about the news they brought, and simply said, ‘You know the test you signed for?’, and I acknowledged I did, and they nodded affirmatively. I took a big breath in and breathed out a sigh of relief and said, ‘Thank god for that!’”

Medical staff were shocked by Dianne’s reaction, but to her, a diagnosis of HIV and AIDS was a treatable condition.

“All I could think was you have just given me a life sentence, when I’ve been living the last week with a death sentence,” she explains.

As a mum of four, Dianne’s disclosure and recovery came with many layers.

Treatment started immediately, with Dianne continuing in hospital for the next few months to get on top of her late diagnosis.

She chose to tell each of her children and had to manage not only their emotions, but who they might speak with about it, and her youngest had to be tested himself.

Stigma, even in 2010, was very real. Medical staff encouraged against sharing her diagnosis, but Dianne – knowing her health depended on living her truth and doing all that she could to build her immune system back up, which included taking antiretroviral treatments, was honest with herself and her close circle.

“My partner, who I had been with for years since separating from my ex-husband, was my rock. Without his love and support, I’m not sure I would have coped,” she says.

Nine years on from Dianne’s HIV diagnosis and many challenges later (she survived a rapidly advancing breast cancer in 2018), she manages her life and health a little differently to the earlier years.

“I’ve changed how and what I eat, and I know that I can only work two days a week to keep myself optimal at all times. Earlier on, I used that time as the National Chair for Women with HIV, and in speaking opportunities with the Health Minister and for Pozhet. More recently, I give that time to working in an HIV outreach team and speaking publicly about being a woman with HIV,” Dianne says.

“I think when you get that diagnosis, you go into a state of grief and shock. You must be gentle on yourself – give yourself time and space to accept it, find your place and move forward. For me, that took a couple of years. There is no right or wrong time.”

After a lifetime of regular blood donation, Colin realised he hadn’t donated for a while and wanted to start again. He was living in Wollongong and studying nursing at the time.  Prior to attending the Red Cross Blood Bank, he had recently been sick to the point of having a temperature of over 41 degrees.  He was admitted Wollongong A&E in which they had done a variety of tests, but they all came back negative.  However, they did not test for HIV.

After he was better, he went to the blood bank and gave a litre of blood.  A week later, he received a call from the Sydney-based blood bank requesting he come in for a follow up test as his blood donation had shown he was HIV-positive.

At the time of Colin’s diagnosis, he was 41 years old; however, he clearly remembers being in his mid-20s when the National Advisory Committee on AIDS (NACAID) aired its controversial Grim Reaper awareness campaign on Australian televisions in 1987.

“My first thoughts after that call were, ‘I’m finished – I’m dead’,” Colin says. “I didn’t know what to do, I had no one to talk to and I was recently separated from my wife, which became permanent after my diagnosis was confirmed.”

When Colin visited the Sydney HIV clinic and consulted with a doctor there, he realised it wasn’t all “doom and gloom.” Immediately, he commenced treatment and continued to travel to the Sydney clinic for his medication and blood tests, out of fear he would be recognised by attending his local clinic.

“When I eventually switched to my local clinic, they were great – they reassured me of confidentiality in the industry, which was important because I was a registered nurse working in a hospital by then. Once I learned my diagnosis wasn’t the end of me and that I could still have kids if I got treatment, I was able to be a bit more upfront about my situation, especially with colleagues,” Colin explains.

Colin rode with the bumps and decided to wear his HIV on his sleeve.

In addition to his HIV, Colin deals with an unrelated, hereditary blood condition called Factor V (five) Leiden, which increases his risk of blood clots.  So he now has to take Warfarin.  To top it all off, he had to come to terms with being diagnosed with depression, which actually came first.  How does he deal with these setbacks?  By playing a sport he is passionate about. As a goalkeeper in field hockey.  It keeps him very well grounded and now plays with his youngest son.

But you can never know how someone will react when you tell them that you are HIV+.  He says: “I’ve had an ambo freak out when I told him of all the meds I’m on, that I’m also on antiretroviral medication.  I even got one whole wall of the emergency department to myself on that occasion, but I’ve learned to wear it on my sleeve.  I’ve even made myself a friendship bracelet with red ribbons on it for World AIDS Day. I’m not ashamed about it. I just manage it.”

Colin has four kids and told all of them about his diagnosis, and – like the bracelet – he started putting HIV-related stickers on his fridge, which opened the door for conversations at home with his kids.

“There’s a lot of misinformation out there and even while I was going through my treatment, teachers were teaching my kids the wrong ‘facts’.

My youngest was 14 at the time and I came up with some myth-busting style questions, like: did you know I’m not going to die from HIV? He started crying because, from what he had learned, he thought I was.”

Colin has found solace in opportunities that enable to create better awareness of risks of infection with mates in his hockey team. He has also embraced his ability to recognise moments, in his profession, where those facing a possible diagnosis needed to talk to someone ‘who knew’ that being HIV-positive was not the “be all and end all.”

Living his best life.

“My philosophy now,” he says, “is – I’m positive, get over it. You’re negative. Everything is fine. When people find out I’m positive – whatever their reaction is, that’s on them.”

For Colin, learning of his HIV-positive diagnosis hasn’t changed the way he lives. He manages his condition, which means his viral loading is non-existent. “It always is undetectable,” he says.

As for advice for someone newly diagnosed, he offers this: “It’s not the end of the world. Life still goes on. You can still have a normal life. You can still have a relationship. If you are a woman or a man – you can still have kids. The biggest thing is the shame factor and I’m not ashamed of being HIV positive. I will always be positive about being positive.”

When she arrived in Australia from Zimbabwe in 2012, Sanaa begun forming hard, ball-shaped lumps in her underarms. Initially, she thought it was due to the deodorant she was using, but they turned out to be abscesses and quickly became septic, resulting in a visit to Armidale Hospital’s Emergency Department.

When medical staff asked to do a HIV test on Sanaa, she thought nothing of it.

“I said ‘yes, go ahead’, as I wasn’t expecting that to be what was wrong, so I was very shocked when the result came back positive for HIV,” she says. “At the time, I was living alone in an isolated, regional community and my family – my community – were so far away in my homeland.”

No matter the distance, Sanaa confides that even if her family had been nearby, she still would not have disclosed her diagnosis at that time, as she herself took a long time to get used to the idea of being HIV positive.

For Sanaa, self-caring had to come before sharing.

“It wasn’t until a year after I was diagnosed that I chose to tell anyone about my situation, and even when I did, very few people knew and do to this day,” she explains.

“Part of this was me in denial. My news was something I kept within me – the early stage of knowing was not easy; I would think about it every night. Then, there was and is still a disclosure issue due to my African background.”

Playing heavily on Sanaa’s mind was the impact her disclosure would have on her family.

“Disclosure in my community is not an individualistic action. Because we have such a strong communal approach to how we live, you must consider the impact your disclosure will have on your community. You must ask yourself, ‘what will this mean for the people around me?’” she explains.

Sanaa’s concern was certainly a founded one; just before she came out to Australia, Sanaa had lost her sister to HIV and she was worried disclosing her own diagnosis would open those healing wounds for her mother. She also thought about her own children, now adults, and whether they would understand, accept and continue to include her in their lives.

“The first person I told was my eldest daughter. A week after I told her, she phoned me and explained she had been quiet because she was trying to get used to the idea and that she had since thought about it, and decided she wouldn’t judge me and that she would support me with anything I needed.”

For a long time, Sanaa’s eldest daughter was the only person who knew her ‘secret’, even when she returned to Zimbabwe to visit her and the rest of her family.

“It was a huge relief to have my daughter support me with my HIV diagnosis, as I was raised believing that if someone judged me, they would abandon me.

“When my younger daughter had completed her university studies, I chose to tell her my status, but she already knew. She has seen me taking my antiretrovirals and Googled it for herself. I am yet to tell my son,” Sanaa adds.

Years on, sharing has become Sanaa’s strongest support mechanism.

While it was challenging for Sanaa to maintain the privacy of her status in a small town early on, her doctor connected her with a social worker, and he encouraged her to find comfort in others experiencing what she was.

“The first time I attended a social gathering with a HIV network, I was worried I would be judged, but coming out, I finally felt like I wasn’t alone. When I look back now, I am not the person that I was then and those social events really helped me build my resilience,” she says.

“HIV has taught me to be more open, to be less judgemental and the importance of building my own resilience. I learnt to be resilient by taking home the lived experiences of people who have gone on this journey before me – some for over 20 years! I look at those people, knowing I am less than 10 years into my journey, and I am happy knowing there is so much ahead of me.”

Sanaa knows she might not be able to take away other peoples’ fears, but she is proud to use herself as a living example of someone who has gone through what others are just starting to go through.

She says: “No matter how bad a situation has been, each one of us has a positive story to tell and it’s this positivity that keeps each of us going, and that lives on for others needing something to hold up as hope. For me, talking about it is therapy.”

Susie is one of Pozhet’s long term clients. Her life and perspective has changed significantly since she first visited our service many years ago. She has shared her story with us below.

This was a shock to me as being heterosexual and not engaging in the more “risky” activities HIV was the last diagnosis I had expected. I was stunned as to where I could have picked it up. Eventually I concluded it must have been through “Molly” at the local pub. I never was one to use condoms, after all I don’t even dress for dinner! What ever – now I had the virus and a new chapter in my exciting life was to begin.

Initially I withdrew from my social cycle. After all how could I explain constant sweats and a body rash? It didn’t look good. I spent Christmas 2012 day alone with my little dog.

In January 2013 the Albion Centre put me in contact with Pozhet.

This proved to be a God-send. They in turn put me in contact with people who were in the same situation as me. I could ask questions and get the correct answers, as earlier to my horror I had discovered that many GPs knew very little about the virus and modern treatments. “Just put some honey on your rash” instructed one GP. Yuck, I thought… that would be sticky….and messy. I would rather have dressed for dinner after all!

The keen team at Pozhet encouraged me to be open with these other survivors This was great as my generally happy disposition was now being increasingly submerged by dumb, distractive, even suicidal thoughts….and I didn’t like it!! I had begun to think of myself as “THE VIRUS” instead of a tall good looking guy who just happens to have HIV in his system….and sometimes condoms in his pocket.

At Pozhet I saw people beginning to believe that having HIV doesn’t make them dirty or low-class any more than having diabetes or a heart condition does. People who often for the first time in years began to see hope in their lives. Pozhet….I salute you!!

Finding out

It was 1998 I had had hepC for 15 years but had never spent a day being sick from it. was at my local GP for a normal health check up and my doctor decided to do a blood test to check my hepC….

It was 7 days later when my nightmare started, I was on the methadone program and I was at the clinic to get my daily dose and there was a message to contact my GP. My GP couldn’t ring me as I didn’t have a telephone so knowing I was going to the clinic she left a message to contact her. When I rang my GP I knew something was wrong because I normally only got to talk to the person on the front desk. This time, when I rang I was put straight through to the doctor. I could tell in her voice that something was not right. In a soft voice she asked me to come in and have a talk so I made my way to her office. When I arrived at her office I didn’t wait in the front room I was taken out the back to a lounge room and a cup of coffee was made for me. Then my doctor sat down she said that she had some bad news but not to panic.

I thought she was going to tell me something was wrong with my hepC. I couldn’t believe what she said. In a soft voice she told me that my blood test had come back and I was HIV positive. At the time all I knew about HIV was that if you got it you were going to die. Also I thought I was the only heterosexual person that had it because I thought only gay people could get HIV. I knew that I could get it from sharing needles but I thought I would never catch it because I was very careful when I did share a needle and would bleach if I had to use one that someone else had used. But I found out the hard way why they say “never SHARE A NEEDLE”. As I sat there I could see her lips moving but I couldn’t hear her voice because the voice in my head blocked hers out. All I could think about was what I was going to do and what were people going to say.

Telling people

I also had in my mind what were people going to think of me.

At the time my family had written me off because my family was very “strictly no drugs” and in their minds once a user there was no recovery so my relationship with my family was none existent. But I had to tell someone so I rang my mother.
“BIG MISTAKE” when I rang my mother, I had to convince her to listen to me and not hang up which I managed to do, so I told her. Her reply was – I knew the chances I was taking drugs and using needles and now I was being punished so don’t come crying to her. So my fear of rejection had started, my family didn’t want to know me which I had expected but I thought if you had news like I had my mother would understand and support me. I started thinking if that’s how my mother took it – how would other people think about me.

So what I did was to decide not to tell anybody (not that you have to tell anybody) and to forget that I was positive. If I could just get on with life then it would go away.

For several months things went fine but I’d started seeing a lady friend and things started getting serious. My doctor had tried to tell me about HIV but I didn’t want to know as I just wanted to get on with life. The only thing that stuck in my head was if I was to have sex with someone and passed the virus onto them and didn’t tell them that I was positive I could go to jail. But I had to tell this woman I was seeing somehow so I asked my doctor what to do. Her advice was take my time and get all the information right or if I wanted she was willing to have a talk with my lady friend and let her know what the risks were. By this time I had convinced myself that whoever I told wouldn’t want to know me.

I spent a week thinking how I was going to tell her and then the night came. I ended up going out for tea and when we got back to my place I bit the bullet and told her. What I thought would happen happened! As soon as I said those 3 letters (HIV) I was punched in the face and she ran – I could hear her screaming 3 blocks away. Also she took it upon herself to tell everyone who knew me and friends started dropping off like flies.

Hiding away

The only thing I could think of was my life was over so I decided that I would move to a country town where no one knew me and start a life of isolation. At that time I didn’t know about groups like Pozhet. I wish I had known. After12 months in this country town not addressing my health I started getting sick and my hepC had started playing up. I ended up seeing a doctor who got me in to see a visiting HIV doctor. This shocked me because I thought I was the only person in the town with HIV!

When I saw this doctor I started anti retrovirals. I also had to get my hepC dealt with so I started the interferon treatment. I spent 48 weeks on the interferon and it worked. The Hep C virus was now undetectable. My CD4 and viral load improved but to me it didn’t matter because I still had HIV and no friends.

Everyday as I sat in this town all I wanted was a friend who understood what I was going through. The only thing good about being in the country town was I got clean from the heroin. But every day I thought my life was worthless and no one wanted to know me. For 6 years I sat in the town just myself and my pet cat. All I had to do was look and support was there but I just felt sorry for myself and worthless.

Making changes

One night it all came to a big halt, I decided that I wasn’t going to do this anymore. I added up what was good in my life and that added up to nothing. A strange thing happened! I just became very calm and prepared for the end.

I’m so glad I had my pet cat because if I didn’t have my pet I wouldn’t be writing this. What was strange was my cat jumped onto the coffee table and just stared at me. It’s if she knew I was about to do something stupid and when I was looking in her eyes I started wondering who would take care of her. I’m so grateful for my cat snapping me out of what I was going to do.

Because I had been a user I had destroyed my veins so no one could do blood tests in the town. My HIV doctor arranged a trip to Sydney to get all my tests done and when I was in St Vincent’s Hospital I had a chance to hear about the services that was here in Sydney. My doctor said to move back to Sydney because the life I was living in the country town was not living so I moved back to Sydney with the help of BGF which I’m very grateful to.

The second service I hooked up with was Pozhet, I also got an Ankali Buddy and I couldn’t believe that people volunteered their time to spend it with people with HIV. At first I was quite scared but I started going to workshops and meeting people and I seen I wasn’t the only person dealing with HIV.

My life has changed so much. My real family doesn’t want to know me but I feel blessed that I have one of the biggest families one could ever want now that I’m involved with all the services.

At a workshop I heard a saying that has stuck in my head “WE’RE POSITIVE SO BE POSITIVE” so now that’s how I live my life “I’M POSITIVE” about everything I do now and I have made some unbelievable lovely friendships with some very special people. I now think and this might sound strange but I’m glad I’m positive if I wasn’t I wouldn’t be looking after myself like I do and I wouldn’t of got to know all of the lovely people I consider my family now. I think a lot of you who read this will know who I am and I just want to let yous all know that I’m so proud to know every one of you and I thank you for all your support.

I want to say a special thank you to all the people at Pozhet, The Pozhet Social Club, the Tree Of Hope, BGF but the biggest thankyou has to go to my Ankali Buddy you has given me the strength I have today. I wish I could put your name in here because your name should be up in lights, “you’re an amazing person”.

So to end on a pleasant note – if you are reading and have just been told that you are positive, life doesn’t stop because we’re positive. There are people in the world that really care and life is worth “Living” but you need support and friends.

From a person that’s positive and loving life.

Peter

Dianne Nyoni from Positive Speakers shared her personal story as a woman who was diagnosed late, and is now one of the public faces of women living with HIV in NSW. Click on the image to view the video of Dianne’s story.

At the Pozhet launch in October 2014, she spoke eloquently about her journey and addressed the value of having a service like Pozhet which provided support, education and information for heterosexual men and women who often feel stigmatised and socially isolated.

This was a shock to me as being heterosexual and not engaging in the more “risky” activities HIV was the last diagnosis I had expected. I was stunned as to where I could have picked it up. Eventually I concluded it must have been through “Molly” at the local pub. I never was one to use condoms, after all I don’t even dress for dinner!  What ever – now I had the virus and a new chapter in my exciting life was to begin.

Initially I withdrew from my social cycle. After all how could I explain constant sweats and a body rash? It didn’t look good. I spent Christmas 2012 day alone with my little dog.

In January 2013 the Albion Centre put me in contact with Pozhet.

This proved to be a God-send.  They in turn put me in contact with people who were in the same situation as me. I could ask questions and get the correct answers, as earlier to my horror I had discovered that many GPs knew very little about the virus and modern treatments. “Just put some honey on your rash” instructed one GP. Yuck, I thought… that would be sticky….and messy. I would rather have dressed for dinner after all!

The keen team at Pozhet encouraged me to be open with these other survivors This was great as my generally happy disposition was now being increasingly submerged by dumb, distractive, even suicidal thoughts….and I didn’t like it!! I had begun to think of myself as “THE VIRUS” instead of a tall good looking guy who just happens to have HIV in his system….and sometimes condoms in his pocket.

At Pozhet I saw people beginning to believe that having HIV doesn’t make them dirty or low-class any more than having diabetes or a heart condition does. People who often for the first time in years began to see hope in their lives. Pozhet….I salute you!!