Positive Life NSW

Adrian always felt he was living a secret double life – juggling a dual diagnosis of HIV and mental illness with a professional career. With treatment and support, he has learned how to take control of both conditions and live a meaningful life.

I often feel like I have been on a roller coaster at high speed in a dark tunnel for 19 years without knowing where exactly the roller coaster was going. Even so, it seems strange to look back and consider the length of the rocky road I followed. I never considered telling my HIV story because it seems like giving into an inevitable finale when all I want to do is keep on living.

In the early days, so many young people died. It was all around us. Hence, being self-indulgent seemed disrespectful to them because their stories were never told. I am conscious of our relative privilege here in Australia compared to those with HIV in many other parts of the world where effective treatments are not widely available. When I was asked to share my story, I initially resisted for all of these reasons, but then something inside me said it is time to ‘come out’. I also thought there might be others out there who are also waking up to the effects of HIV and mental illness and, like me, feeling paralysed by the sheer weight of this double taboo.

It might now be ok to speak out about sero-conversion and the experience of living with HIV, but the stigma of mental illness remains relatively unchanged. Admitting to living with both still seems something of a final frontier for those of us fearful of the consequences of disclosure.

The first diagnosis
I probably contracted HIV in 1990, but I was not diagnosed until 1991. I was living in Melbourne, going to uni, working two jobs and burning the candle at both ends. It came as a complete surprise and a searing shock. Those were still very paranoid times; perceptions and understandings of HIV were completely different then. It all seemed like a surreal fairy tale, as if everything were in suspended animation and the life that I might have had disappeared from that part of my brain controlling my hopes, aspirations and future vision. I remember feeling like my whole world had come crashing down around me yet still feeling slightly dissociated from the news that I had what was then called a ‘terminal illness’. I did not wake from that dream for some time.

The sense of dislocation and alienation from myself was very real for me. I did not understand it at the time, but it now makes more sense in the wider, holistic context of my dual condition.

I still remember the enormous fear and prejudice, the sense of uncertainty, the stigma and the ostracism that we experienced then. There was also an awful lot of unacknowledged ridicule on the gay scene. Memories of the ‘Grim Reaper’ ads shaped reactions of panic and doom in the media. People with HIV were seen as dangerous threats to themselves and those around them.

The escape
Almost unconsciously, I began to run away from myself. I packed the cerebral car and drove at high speed from a bad nightmare that I thought would perhaps just go away. I went underground and became completely immersed in other things, which seemed like a good idea at the time. While I decided not to let HIV run my life, this dissociation started to frame my relationship with the virus that I thought of as some kind of cruel punishment.

I became extremely secretive and reclusive – my escape from the virus meant that I could possibly run away from death itself. Concealing HIV on a daily basis in the years ahead became a way of life. My own sense of shame and fear guided my protective mechanisms with ever more elaborate methods of avoiding the subject. Denial was a hat that I wore very comfortably. I just wanted to get on with my life as if nothing had really happened.

As part of my escape, I went to the UK where I took up a scholarship. No-one knew about my status and I was able to avoid addressing it at all.

Confronting reality
In the mid-1990s, I had a breakdown due to the pressure of concealment and I moved to Sydney. One of my parents was also experiencing serious health problems around this time. The combination of these events meant that I had to start taking responsibility for my own health or I would probably get sick and die. I realised this after a good friend shook me and said that I needed to get help. After that, I started to slowly wake from a state of denial but it was still hard for me to accept my diagnosis.

I did not take well to early medications and found the side effects toxic and disturbing. I often felt very nauseous, the lipodystrophy began to change my body shape and the banging headaches seemed to last forever. On some drugs, such as efavirenz, I experienced hallucinations and was unable to control my bodily functions.

I decided to stop my medications and try alternative therapies. In particular, I found Ayurvedic therapy very transformative and Chinese herbal medicines helped boost my immune system and provided some relief.

As medications became more palatable, I was able to find a combination that suited me after 2000 with the help of my incredible doctor, whom I still see. His advice enabled me to live a relatively ‘normal’ life at that time.

I resumed my studies again after a prolonged absence and tried to get back on the rails after feeling I’d fallen off completely. Nevertheless, pretending to be a person without HIV was a fantasy of the person I wanted to be. It seemed almost possible as I buried myself in work and study as strategies to keep busy and keep the virus at bay. It never stopped me from doing my job and my transformation into a diligent, yet directionless, workaholic saw me take on too much in an obsessive attempt to prove to the world that I could beat the virus.

Revisiting the past
I was born and brought up in the UK, the product of a mixed-race marriage. I have always been very proud of my father’s south Asian origins, but the HIV diagnosis made me want to dig deeper than my family really wanted me to. Despite my diverse, multiracial background, there was a lot of pressure to be white, British and heterosexual. While this was a trifecta that I was never going to win, I did not feel comfortable with those categories. This became more pronounced when I embraced Australian gay culture where my sense of belonging shifted so that I was able to explore the diversity of my own heritage.

The resistance to my British side and the newly found zeal for my Asian side, however, also became a bit of a diversionary tactic that prevented me from dealing with aspects of myself that I just could not accept. I failed to acknowledge the hidden history of debilitating mental illness in my family, despite confirmed diagnoses and evidence to the contrary. In retrospect, this was the real history that created the circumstances of my HIV diagnosis and my reactions to it.

My childhood was marked by erratic and dramatic change. We often moved house at short notice. I changed schools regularly and we ended up migrating to Australia without much consultation with the rest of the family. There were things that you did not talk about.

As a child, I did not think it strange that one of my parents had two distinct names and personalities. I thought nothing of it. In fact, it added a lot of colour and drama to the pace of ordinary life. Another family member was always very ill with ‘postwar stress’ but only in the last years of his life did I discover the extent of his true condition. As the eldest, I was responsible for protecting my family and keeping their secrets despite the fact that I was often being pulled out of class by social workers, often disappearing completely for a rest.

The dark clouds
I guess that all coming out stories are specific and unique. Mine is not special or extraordinary, but something sinister hung like a dark and repressed cloud over my experience of living with HIV. In some ways, this darkness sometimes eclipsed my relationship to HIV completely.

From an early age, I was predisposed to colourful behaviour and I just assumed that my escapades were my apprenticeship to the world of camp. As a child and teenager, my emulation of popular culture icons bordered on the obsessive. For a time, I thought I was Morrissey, then Adam Ant, and then Boy George, and then Madhur Jaffrey became an unlikely role model as gender didn’t seem to come into the equation.

When I came out as gay at 18, my friend ‘Brooke’, who was very well-known on the Melbourne drag scene, used to take her young friend to the Prince of Wales Hotel in St Kilda on Sunday nights. Gender-bending was big in the 80s and the gay scene was both theatrical and ambiguous. I also remember my Hare Krishna phase, the fascination with French and Russian historical figures, and the bookish recluse who was a bit like Boo Radley in To Kill A Mockingbird who hid in the library and only emerged when it was completely necessary to do so. Fortunately, my hunger for reading and knowledge often pulled me back to some sense of normality where I also remained serious and studious. I was a floating chameleon who was a polar combination of extrovert and introvert, of joyousness and melancholy, of exotic and ordinary, of theatrical and scholarly.

Whereas adolescent forays into harmless escapism were one thing, psychotic delusions were quite another thing altogether. Because of the nature of my childhood and peer experiences, my extravagant, excessive and self-indulgent behaviour was always naturalised as an expression of my ‘eccentric personality’ and quickly swept under the carpet.

I began to experience paranoid and persecutory delusions and these became both intense and serious. Ranging from delusions of grandeur to distortions of reality, the chattering voices in my head had different accents and characters, and were often projected externally as distinct personalities. Everyday functions such as going to the supermarket or going to work became battles to contain myself.

My mood swings were very intense and unpredictable. The periods of invincible and confident ‘highs’ were inevitably followed by periods of crushing and worthless ‘lows’. I started to seek help when I felt unable to manage both the effects of living long term with HIV and what was a noticeable and alarming change in both my personality and behaviour. I felt out of control but, more alarmingly, I felt that I had little control over my own perceptions.

There were also moments when the HIV symptoms and these behaviours clashed with each other, forcing my cerebral car off the road altogether and putting my life in turmoil. These identifiable patterns were extremely debilitating causing me to break-down and feel completely unable to cope.

The second diagnosis
While I was originally diagnosed with bipolar disorder, this was later revised to schizoaffective disorder due to the acute nature of my symptoms. I was able to put a name to the cloud that seemed to hang over my life but I was confused about what it actually meant.

I remember feeling shocked with the diagnosis, as if I was immune from my own genes. It never really occurred to me that my family’s secret had affected me too or that I was suffering from another chronic illness that needed separate treatment. It was also like being diagnosed with HIV all over again. It forced me to look at myself in a microscope and ponder how on earth I managed to get up every day and function.

With good medications, counselling and time out, I am now able to control the onset of psychotic delusions and keep the voices at bay, enabling me to feel more in control of myself. However, it is still a struggle to come to terms with the longevity of my symptoms and my addiction to the extreme feelings of pleasure and pain that they produced.

Because the symptoms of mental illness are on public display for all to see, those of us living with it are left with a fair amount of embarrassment and guilt. We look over our shoulders to see distinct and repetitive patterns of damage that our behaviours may have caused. However, these feelings are often exacerbated by the exasperation and ignorance from those around us with little knowledge about the impact of delusionary episodes or their intensity when we are experience them.

Acceptance
Dealing long-term with HIV as well seems almost insurmountable, but in some ironic way, having something ‘bigger’ to deal with meant that I was able to put HIV into a wider context of everyday challenges. Losing control over your own conscious decisions and the boundaries of your own sense of self is one of the most frightening illnesses you can ever experience.

Whereas HIV affects the mind and body in ways that can be quantified and monitored, mental illness seems to twist your perception of reality to the point where the boundary between what is real and what is not is often blurred.

In some ways, this meant that HIV could be dealt with through the lens of delusion. Was it real or not? Was it happening to me, or to someone else? Would I wake up one day and be told that one of the voices in my head was HIV-positive but I wasn’t? But in the end, the truth of HIV always managed to surface to take a leading role.

I went to extraordinary lengths to conceal my status from others and to attend medical appointments ‘incognito’ without telling anyone where I was going, but symptoms emerged that could not be dismissed as imaginary. I started to have problems with low platelet counts and was diagnosed with idiopathic thrombocytopenic purpura (ITP), which meant I had to have some immunoglobulin transfusions. Other HIV-related symptoms that emerged were managed with the same ‘cloak and dagger’ attitude. I ran to and from doctors’ appointments in between teaching classes like a chicken with its head cut off. As a result, I often felt that I was running in repetitive circles but not really getting anywhere at all.

I’ve also experienced the onset of some HIV-related cognitive abnormalities. It was hard for me to distinguish what was an existing mental health condition and what was HIV-related, and it all became incredibly confusing. With a thud, I hit a brick wall.

The advice and treatment that I am getting is fantastic and I’m always completely overwhelmed by the thankless support available to HIV-positive people every day. Taking ownership of my health, telling my family about my diagnoses and reaching out to those who experience dual conditions has been very liberating.

This journey has helped me wake up to myself and strive to get better in a space of reality and acceptance. The support and friendship of my partner of 12 years has been an important factor in sustaining my survival and keeping me sane. I feel humbled and blessed that we’ve managed to weather the effects of two illnesses in our lives because of his love and understanding. In many ways, he’s the unsung hero of my life. He never wants any praise or acknowledgement but without him, I possibly wouldn’t be here.

One important thing that I’ve learnt from living with a dual condition is that education or some form of training can be a lifebuoy for people with disabilities. Running at high speed in denial might have seemed irresponsible, but education gave me a sanctuary and sense of purpose when I was lost and confused. It became a refuge from the pain of stigma, enabling me to do something that had a real social purpose.

Passionate and inspirational teachers have provided me with an avenue to think of something other than my own sense of mortality. Looking beyond your own needs can be a very cathartic way of seeing the bigger perspective in life. The opportunity to get a tertiary education acted like a safety net when I often felt like jumping out of the window due to despair. When completely out of control, it was often the only thing that kept me going on a daily basis.
Life didn’t end post-HIV diagnosis. In fact, life actually began for me and opened up all sorts of possibilities that were not there before I was diagnosed. I’ve been very grateful to have had educational opportunities that my parents could never have imagined.

On reflection
What would I have done differently? Telling the real story behind my denial and concealment is really painful because it might attract fear and stigma in an era where I feel that there is still a considerable amount of ostracism and ridicule facing people who are living with mental illness and HIV. But, by sharing my experience, I hope it might help to change attitudes or to encourage others out there to seek support and treatment earlier than I did. Earlier detection and management would have saved me (and those around me) from a lot of suffering and pain.

We learn strategies of denial very early in life and shame is never an easy thing to deal with, but taking charge of mental health issues is the first step to healing and acceptance. In some ways, it might have been better to face the impact of my dual conditions earlier, rather than living through 19 turbulent and painful years in a closet of my own making. I realise now that ‘running away’ from myself was no solution either. While I can’t change the past, or the impact of my illnesses, I can change the present. Living with HIV is still a roller coaster, but I’m no longer in the dark. Getting help, not losing hope, having faith in myself and taking responsibility for my own health decisions are far better options for living a meaningful life.

Resources

If you are concerned about your mental health, speak with your GP or specialist.

SANE Australia is a national charity that conducts programs and campaigns to improve the lives of people living with and affected by mental illness.
Web: www.sane.org
Tel: 03 9682 5933, 1800 187 263

Mental Health Association NSW
Web: www.mentalhealth.asn.au
Mental Health Information Service Line: 1300 794 991
Anxiety Disorders Information Line: 1300 794 992

Schizophrenia Fellowship of NSW (SFNSW)
Web: www.sfnsw.org.au
Infoline (9am–5pm): 02 9879 2600, 1800 985 944

AIDS Dementia & HIV Psychiatry Service (ADAHPS)
Web: www.health.nsw.gov.au
Tel: 02 8382 1810