First published 11/11/2011, Updated 12/3/2013
I recently received a request to fill in a research questionnaire done by a Masters Student in Health Psychology, in association with the Hospital relating to HIV/AIDS patients. The results were printed in the gay press and the results outlined that few patients use the Internet to access information on HIV treatments and ‘how few challenge their physician or pose questions regarding treatment’.
At first I was pleased that research was being done, I feel Health Psychology plays a major role in the path of HIV/AIDS, however after several attempts to fill in the form, eventually out of frustration, I discarded it. I found the questionnaire failed to acknowledge the complexities of the virus, as well as the complexities and journeys of individuals, to create a more true and meaningful result, or even assess trends and therefore was unable to fill out the form and tick the boxes in a way where I felt that I was being true to myself and helpful to the study. The findings of the research were presented at a recent Body Positive seminar, and one recognized physician pointed out, ‘there is no expectation of a cure for HIV in the foreseeable future’. I question this by asking, ”Is it because the whole HIV/AIDS does not exist in the threshold of which we have all believed it to be?”
My journey with HIV has been complex, varied and challenging. There have been times due to circumstance where I have adhered rigidly to the information my physician, the gay community and the press told me, and not questioned my medication. There was a time when I demanded to come off a medication. There have been times I have questioned physicians and received answers I was happy with and times when my questions weren’t met with open arms. There have been times when I’ve never questioned my Physician. I have had periods where I never used the Internet, and times where I’ve occasionally used the Internet, and today where I constantly use the Internet, raise questions and do my own research.
My name is Johnny Trifunovich, I was born and bred in Auckland, New Zealand, and at 19, in 1987 (when there was roughly 1 death from AIDS in NZ and less than 300 people diagnosed HIV), I took a year out at Auckland University to live in London.
I returned 23 years later in May 2010 and now reside permanently in Auckland.
I was diagnosed HIV-positive in 1994, my initial response was to laugh in what I see as shock/denial, but as I stood up to leave, my legs gave way beneath me! It was a time when there was some hope but ultimately we were being told death was pretty much imminent and it was just a matter of when. It was a time when it even felt unsafe to share drink bottles, or eating utensils and, naturally, fear presided. Over the years I watched some friends die, and other friends live on. As with many so called terminal illnesses, I observed the ones who claimed the virus and focused on every blood result slowly or suddenly die, or worse kill themselves, and those that focused on other aspects of their life seemed to pull through and live on.
When I was diagnosed, I followed the gay tribe and the doctors appointed to our care without question, we saw the physicians as the gods with hope, even though they had no answers, we presumed they knew better than us and followed what we were told. I felt fortunate that I was in the UK, receiving the best care, where education was vital, especially within the gay community. The clinic I attended was the Kobler Clinic at Chelsea and Westminster Hospital, and the times I required hospital care it was in the John Hunter Ward, specifically for HIV. Over the years, with my many visits, I got to know the teams there quite well. It almost felt like home away from home. There was a sense of belonging amongst the other sufferers as we united in our cause. The care and respect was paramount and you felt safe. All stigma associated with the illness was dealt with to help sufferers feel like they had dignity and self worth. The Doctors and staff were beyond reproach, doing everything they could to save our lives and give us hope.
As time went by and my journey progressed, a lot of what was going on didn’t make sense, but almost everyone, not just the General Public, but the Doctors and Researchers working on the Disease as well as the gay community believed that HIV causes AIDS and you will die from AIDS. We took the drugs to stay alive and although aware of the side effects, I never read a drug information leaflet, you only had to begin reading it before it was just too overwhelming to want to know, side effects happen in small percentages, so I thought, and were nothing to concern myself with. It is only today that I am aware of ‘black box warnings’ in medications. A black box warning means that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects. The odds are way more in your favour than winning the lottery.
In the years from 1994-2002, I was constantly ill, and on different combination therapies. Naturally they were all trials and all had adverse side effects, but ‘I would die if I stopped taking them’ there was hardly a choice it seemed. Every time I caught a cold, or had an illness, everyone including myself was scared that this may be the one that sets off the journey into AIDS and death. Looking back I question whether I had a single illness relating directly to HIV. I never questioned then that my illnesses may be due to my lifestyle, stress, hard work or not taking care of myself, let alone the many side effects and unknown illnesses that may have been due to the trial drugs used in combination therapy.
About a year after my diagnosis, I did have a total breakdown, I recall a long period where, I was unable to work, I struggled to get up in the morning, or at all, I rarely opened my curtains and used to spend all day building up the courage to go across the road to buy milk and dinner, that was best described as binging, to satisfy a hunger that existed, not only for food. I hid myself away, even from friends. I lived in squalor as I tried to make sense of my existence. Not long after this I had an acute case of Shingles, (clearly the stress was overwhelming) in which I was hospitalised for a month and on morphine for 6 months via my appointed pain doctor. Eventually I realized I had to get back to work to regain my purpose and sense of self worth. Somehow, in amongst a society in London, where I could stand up and feel proud to be myself and express myself as I felt I was entitled and where I could hold my lover’s hand freely in public. Maybe there was a part of me that also believed what a large part of society felt, that we the undesirables deserved what we got, and if we choose to live those lives then we must face the consequences.
I was vaguely aware of the incredible strength of the drugs being trialed on us; they were often referred to as chemo strength. One drug I was on was Didanosine (ddI); it was like a big chalky horse tablet. After months of feeling nauseous taking it, and after my physician told me to persevere, as the symptoms will pass, it eventually got to the stage one morning where on opening the bottle the smell made me physically throw up. On returning to my physician this time I received a variation of the same drug in liquid form, a sort of kiddies’ concoction, I was disheartened, I wanted to come off it, but persevered. My body knew this drug was wrong and fought to reject it, but I believed I had to take it.
In the late 90’s, I was on Efavirenz, which was causing depression and suicidal thoughts; I didn’t realize it was the drugs that were making me feel this way. When I eventually returned to the Doctor, I was placed on Haloperidol to counteract the side effects, which helped, and was told it was just while my body adjusted to the effects of Efavirenz and it should settle after a few months. However each time I tried to come off the haloperidol, the thoughts and feelings returned. Eventually whilst on holiday and staying with a ‘family GP’, she was shocked to see that I was taking Haloperidol, and questioned: Are you taking these? I explained that they counteracted the side effects of my combination therapy, ‘Oh my god!’ She replied, ‘these are anti-psychotic drugs; they give them to people in asylums’. This news rocked me as I digested the severity of information I just received. The drugs that are supposed to be saving me are stopping me becoming psychotic due to the other drugs, which are supposedly keeping me alive? What was my life becoming? On returning to the UK, I demanded to be taken off those drugs. I’m grateful today that I did. Who knows what the long-term effects of taking those drugs may have had on me.
In 2002, 8 years after my diagnosis and after my 3rd (and final) suicide attempt I ended up in hospital. Health Psychology plays a huge part for many sufferers, as we struggle not only with our own mortality but also with the stigma, and what ever other personality traits we grew up with, such as feeling abnormal being gay, along with whatever regular life challenges we had to face along the way. There is little dignity for HIV/AIDS like there is for cancer or other so called terminal illnesses.
My second suicide attempt almost found myself being sectioned, but due to quick thinking and a fear of being locked up and sedated, found myself signed over to my best friends care for the weekend. Over this 8 year period, I was in constant treatment on anti depressants and went through the entire psychological team at Chelsea and Westminster Mental Health unit, the psychologists varied in their approach, but very few seemed to connect and relate to my pain and confusion, and those that did offered very little in practical guidance. What it did achieve though was back up and support as I tried to find my own way through the mess, whilst I struggled to get through life and present myself, as best I could to society with a smile, a laugh and a positive outlook. Finally I was left to liaise with the Head of Department, just to keep an eye on how I was going and to have some form of backup. I am grateful to this as it left me feeling free to work it out for myself yet at the same time having a safety net to fall back on. After my 3rd suicide attempt I went on holiday and sat on a beach for 2 months deciding whether or not I wanted to live. Fortunately I did, I sold my house and retrained into the field of health and fitness and remedial massage in which I currently work in today. Since this time I have slowly witnessed my health, mental wellbeing and happiness improve.
In 1995 when I was first told I had to go on drugs, I agreed, but something inside me refused to go on AZT, for which I am incredibly grateful today. Those that have been on AZT are either dead or permanently disfigured from side effects of drugs. Yes they are alive, however some have had buttock implants so they can sit comfortably, A lot have had, and are having facial implants to avoid the ‘AIDS look’. It’s ironic how this has become recognized as the AIDS look when in fact ‘Lipodystrophy’ which causes fat redistribution, is actually a side effect of the drug AZT, and not a direct effect of AIDS. It’s an AZT look to me, not an AIDS look as commonly known. Many patients in Africa may also exhibit a similar trait, but it is questionable to consider it similar, considering there is an entire nation living with malnutrition and without sanitation.
I finally came off all combination therapy for HIV in April 2010 a month before I returned to NZ. My doctor’s advice before I left the UK was ‘don’t be stupid, you’ll die! You’re a fool if you do!’ This hit me hard and I went home to digest what I’d been told by a man I had respected for many years, I seriously questioned what I had been told, but not directly with him. After a month of affirming my convictions, beliefs, and what I felt was the right thing to do, I threw all medications in the bin. That was 19 months ago and today I am alive and well.
I had come off the combination therapy a couple of years previous, in February 2008, and did so without telling my doctor. My body crashed after 6 months and I was very ill, my Doctor was understandably annoyed with me for not consulting him. I was fed up with taking the meds and beating myself up when I’d forget and ultimately I was waking up and smelling the chemicals through my pores. I had had enough especially as I hadn’t been ill in such a long time and felt like there was nothing wrong with me and I no longer wanted this in my life. I was beginning to feel that there was nothing wrong with me. My Doctor told me never to come off meds as other patients had, who after about 6 months also crashed, apparently because the meds wear off and the virus takes hold, mixed in with the fact that the drugs are so strong that withdrawal is also a contributing factor. Two such patients were in critical care while I was consulting with my doctor. I never required hospitalization at this point and got better without going back on the meds. A few months after this I started experiencing Chronic Fatigue, severe pains in my legs and back, shortness of breath and an inability to concentrate and think straight, all of which subsided after a very long and deep sleep, only to return after a day’s work. I was unable to perform many tasks beyond work and sleep. I went back on combination therapy in about August 2009, as I thought maybe the virus itself was again taking hold and I needed to get back in control and on top of it. However by March 2010 and no change in my fatigue status, I decided yet again I wanted to come off the drugs as they had made no difference. My bloods had improved, but I felt no real physical change. Hence when I came off them the second and final time in April 2010 I was aware I may crash, but 6 months came and went. I question why I didn’t crash this time? Was it because the virus didn’t take hold, or was it because I hadn’t been on the meds very long the second time, and therefore the withdrawal from the toxicity of the meds was a lot smaller the second time? So I question, are the people dying after coming of meds dying due to the virus or drug withdrawal? I feel it’s the later.
My chronic fatigue is slowly improving. I have had every test done both in the UK and NZ, with nothing conclusive about the fatigue. Finally I began looking at the medications I was prescribed to find all the symptoms I listed as side effects of the most recent drugs I was on, Lamivudine and Stavudine, yet at no stage was this looked at. I recall questioning it once on a few visits with the same ‘Walk in Doctor’ at the hospital in the UK, she seemed to look at me as if I was odd, and that I was in denial of my status, and eventually just appeared to palm it off that there’s nothing wrong with me and almost suggested it was in my head. Maybe? Yet it was real, and it continued, and I felt less able to express my feelings and concerns to the physicians.
I’ve never had a flu vaccine, for bird or any other flu, it never made sense. Why would I want to inject myself with a virus, they say it’s ok because the virus is inactive, but why if it’s inactive does it give you flu-like symptoms? I have always been strongly advised to take it and sometimes doctors just walk in the room with the injection ready to give it to me. I forget how many times I’ve heard, are you sure? It’s advisable, especially for someone in your condition’ which used to make me feel like I was pregnant! Still to this day I’ve never had it, and I seem to have less colds and illnesses than people around me.
The CD4 count, although being the corner stone in depicting the strength of my immune system, in real terms reflects nothing to me. My current CD4 is under 400 yet with such an apparent weakened immune system, why do I continue to be so well? There was a time when CD4 used to concern me, now it means very little to me.
I do, and always have got my bloods checked, but on returning to NZ realised I had to go to the infectious disease ward for outpatient care. I understand we are only a small percentage here and that it’s not feasible to have our own clinic, yet how damning and depressing to the psyche to have to attend a clinic with such a title. I was disheartened at the mental and social stigma this adds to people living with or affected by the illness, and the impression it gives to society. It took me 6 months to affirm my beliefs, wellbeing, and pride in myself before I walked what felt like an incredibly unsafe road back into the world of HIV in New Zealand. Fortunately I am strong and can deal with it.
My doctor at the hospital in Auckland is aware I have no desire to go back on medication, but seems to suggest that one day I will need too. How damning to be told such a thing? I never see that I will ever go the route of HIV medications again. After my journey, I question what I am reading and being told by mainstream media and even the opinion within the gay community about the virus. I will continue to question, and only time will tell. There are thousands who have gone my path of not taking the drugs or coming off them, and more and more are beginning to stand up, share their stories and be counted.
I am grateful to many inspiring people, male, female, gay and straight, who were diagnosed positive and questioned the virus in the early days and never took medication and are alive and well today. Also the parents who adopted children who were diagnosed positive and then watched them deteriorate on drugs like AZT, only to take their kids off the drugs and watch them grow into the healthy fit young teenagers that they are today I was disheartened as to why my doctor, who has dedicated her life to helping people, simply said ‘well we probably don’t need to see you for 6 months’ after my most recent visit. This I don’t understand, my bloods improved and I am stable, without medication, yet there is no interest to find out why? Or am I becoming a trend? When I told my story of coming off meds to a staff member at Body Positive, he referred to me as one of the miracles. I’m not a miracle, I’ve just finally started questioning, and taking responsibility for my life. There seems to be little interest in the actual positive side of HIV and AIDS.
The entire world, including the HIV/AIDS Medical/scientific body, and even the gay community seem to be trapped in the belief structure we have held since the 1980′s. We have been walking through mud trying to find answers, slowly making way and improvements but still to no real avail. Many professionals have dedicated their lives to saving people, finding a cure, an answer, or the way out. Yet very few seem to be able to look outside the box, or at least do so objectively without feeling their dedication and hard work wasn’t justified. Well it was! I commend all those that are still working on finding a cure, even though its highly unlikely they ever will. At best the word Health Organisation may simply re define what we classify as HIV or AIDS.
Many factors affect the immune system, stress, diet, drugs including alcohol, and the all too prevalent amyl nitrate regularly sold at gay venues. Is it any wonder with this toxic inhalant (strapped to some gay mens’ nostrils and similar to paint stripper) that so many HIV/AIDS classified gay men strip their lung defenses and acquire pneumonia??
Few organisations focus on people diagnosed with HIV or AIDS who live healthy lives despite having never or stopped taking meds. We seem stuck in the dogma. Yes, people are seeing that we are starting to live longer now and it’s not like it was, but is it really because the drugs have got better? Or do we still believe that HIV causes AIDS and it is deadly? I understand the sensitivity of the subject and the risk people face when coming off meds, hence I understand why I can’t just sing from the tree tops. I have spoken to friends who are seropositive, they acknowledge my journey, but few seem to want to discuss it further. I know I am a minority. A minority that is growing in numbers, and while my story can be waved off with excuses and reasons; I am alive, I am healthy, I do exist and I have a life.
With reference to the questionnaire, whether we challenge or pose questions regarding treatment, I do have questions: Why am I not currently on medications, yet still very much alive after 17 years? Why in recent news items about research chimps being released into a sanctuary after 30 years of clinical trials, fail to mention that the tests being done were to document the progression from HIV into AIDS, yet it didn’t in any of the chimps. The 30 years research proved nothing, except they still don’t know? Is it because it doesn’t? Why aren’t more people looking at the issues surrounding HIV testing and the isolation of the virus? Why does HIV/AIDS have different classifications depending on the country you are in? Has the strong association between AIDS and KS (Karposi Sarcoma), which has been around since 1872, also linked to the heavy popper use in the gay community, especially in the 80’s and 90’s? Was Gallo’s release to the press in 1984 that HIV causes AIDS actually proved? Has anyone ever actually died from AIDS? Or just the 29 associated illnesses? If two people, (one seropositive and one seronegative) caught and died from TB, why would one become an AIDS statistic and the other a TB statistic? Are the recorded numbers of deaths from AIDS, accurate or grossly overstated? Is HIV in nothing more than a mild long term viral infection, similar maybe to something like herpes?
The past week I was compelled to watch an old TV series called ‘Tales of the City’. It was one of my inspirations as a child growing up that there are places in the world where people’s diversity, quirks and expressions are embraced and not judged. Here they are accepted for who they are. It’s set in 1976 San Francisco. The thing I love about it is it’s a time after the stonewall revolution, and gay sex liberation, when homosexuality was beginning to be acknowledged and accepted, and it was before the gays were tarnished as the evil spreaders of the plague with their dirty unnatural sexual depravity, changing even the way gay men feel about themselves and the way they have sex. The series is playful, fun and sensitive, I wonder how differently life would be had we taken the time to look objectively at those original gay men in 1981 that died when it was labeled ‘GRID’ which stood for ‘Gay Related Immune Deficiency’, instead of the hysteria and panic that it was met with.
Had time been taken, research backed up and objections listened to, before steam rolling ahead to create a belief structure which is slowly unravelling. AIDS almost obliterated the gay generation that walked before me, a generation that fought for our liberation and freedom, and where AIDS is blamed for a nation that is starving and living in unsanitary conditions. Before AIDS in Africa we had ‘feed the world’. Now AIDS has less press we appear to have the return of the famine? Did famine ever actually go away in Africa?
So where to now? Well maybe for me, after my 17 year journey with HIV, and all the darkness that came with it, it’s time to start dancing again, maybe it’s time to kiss HIV’s ass and send it on it’s way! As Gran in Catherine Tate would say ‘what a load of old S**t!
The fatigue is getting better, in fact the longer I’m off the meds, the better it’s getting. I am extremely grateful of the lessons in life this journey has taught me, and the way it made me start asking questions, not just about HIV/AIDS, but so many areas of our society that are reflected in this story.