December, 1st is World AIDS Day - which is the day designated every year since 1988 to raising awareness to the AIDS pandemic caused by the spread of HIV infection and mourning those who have died of the disease.
Since then, science and technology have advanced immensely, so being positive is, in ANY WAY AT ALL, a death sentence ANYMORE.
Back in September, I published a blog post called
'The stigma is in our heads', and the response it had was very good. As a result, one of my readers shared with me an article he wrote talking about his experience as HIV+. I found the article very moving and inspirational, and I am grateful he is sharing this article with the rest of the world through
#marlife.
This the article
A pragmatic attitude about being HIV+
There seems to be this fashion today, from authorities, if people are not behaving in the way that ‘society’ wants them to behave then the answer is, education, education, education, or to produce a leaflet or booklet and hey presto people will suddenly change and the world will be a better place. What if the information being given out, people are already aware of? What if the consequences of one’s behaviour is already known by the people who are behaving in that way, what then? What if the underlying problem that needs to be dealt with is a psychological one? A person may behave in the way they do but may not be aware of what underlying causes are driving that behaviour. No amount of sensible talking to, or passing out of information on the consequences of that behaviour is going to resolve anything unless the route to the problem is dealt with.
I did not know myself until the very second I was given my positive HIV diagnosis what had been causing my destructive behaviour and why I had not been aware it. The counsellor who gave me my diagnosis said it was, ‘positive’. At that very instant I had a vision appear in my head of this family member and this feeling, literally, of weight being lifted off my shoulders. I knew, from then, what had been the cause of my deliberate destructive behaviour of going out and having lots of unprotected sex with strangers in order to purposefully become HIV positive. I had been carrying a guilt around in my psychology regarding this family member with whom I had been very close but who had been expelled from the family. My guilt was over the demise of their life and their ultimate death. I felt responsible, in some way, for the lonely way their life had turned out. It felt, to me, as if this guilt had been forcing me into a kind of self-harm process.
At the time of my diagnosis, I had a very mixed set of feelings. Relief, for now I didn’t need to worry about becoming HIV positive any longer. Regret at not realising what had been causing my destructive behaviour sooner but also a sense of power (or control), now what could I do with this knowledge and experience in order to help others?
When I was given my diagnosis I was classed as a seroconverter which simply put meant I was in that period of transition from a negative to a positive HIV status. All my previous HIV tests had been negative. The hospital which gave me the diagnosis invited me to be a part of a clinical trial which was specifically aimed at seroconverters. I was in a state of shock at the time and a little bit overwhelmed by the news and information I had just been given so I said I needed the weekend to think about it and I would give them my decision the following Monday. I thought long and hard about entering onto this clinical trial and thought this would be one of the more beneficial aspects of being HIV positive and any information the medical profession could gain from such a study could only be of benefit to others in the future, so I agreed to be part of the trial. Plus I am a curious kind of fellow and was intrigued as to what might be involved anyway.
The trial started immediately on the Monday, the idea at the time was to give recently diagnosed seroconverters combination anti-retroviral medication for a short period of time, just until their viral load became undetectable, and then take them off that medication and let their own immune system take over. The idea was that their immune system would be boosted by this brief intervention of medication and carry on successfully without it. I guess the key question was, for how long? If I remember correctly, the combination anti-retroviral medication that I was on was, Abacavir, Combivir and Efavirenz each with their own side effects, which I remember vividly and did make me feel very unwell. I did not enjoy taking this medication, but I did persevere for the sake of the study. With my own clinical trial results I did very well and for a good number of years. Diagnosed in December 2001 I was on combination therapy for just four months, my viral load become undetectable and my CD4 count was excellent, I think it hovered just under the 1000 mark for a few years. I had regular check-ups during this trial, I think they were weekly to begin with, then every month and then every three months. One thing that I did learn that was extremely important regarding taking HIV anti-retroviral medication was something referred to as ‘compliance’ or ‘adherence’ which means following your medication dosage and routine very strictly. The amount you should take, in the way you should take it, and at the frequency you should take it, is of the uppermost importance. Why? One of my HIV doctors described taking anti-retroviral medication and the HIV virus as being like a ‘fast flowing river’ (for the virus) and the anti-retroviral medication as being like a ‘brick wall’ holding it back. If for any reason cracks, or holes, appear in that wall then the river (the virus) has a chance to seep through and continue its journey. The cracks would obviously represent the not following the strict medication regime, or the holes would represent not taking (or forgetting to take) the medication.
It was not only the clinical trial that made a difference (in my opinion) my behaviour, since being diagnosed, had also changed. I stopped going out and having lots of unprotected sex with strangers, I guess the simple answer was I no longer ‘needed’ to do it. The guilt bubble that had been driving that behaviour had finally been burst. In addition a new psychological influence had started to show and kept buzzing around my head and that was ‘what if I infect someone else with HIV by having unprotected sex’. So I made a conscious decision, at that time, to explain to every potential sexual partner from then on what my HIV status was. To me it made the decision of who, and when, to tell easier. I also chose, at that point, to be fairly open about my HIV status, again it just relieved a lot of worry, concern and doubts in my head. I decided if I was dealing with anyone who had some involvement in my medical care, including a dentist or an optician, I felt it only right and proper that they should be fully aware of my medical history. After all, how else are they to make an informed and accurate assessment of treatment if they don’t have all the information? This decision to disclose this kind of information is entirely left to the individual and no one should be put under any pressure to disclose their HIV status, it was just right for me at that time.
In 2008-2009 my health started to deteriorate. There were a lot of mitigating circumstances that were having a very negative effect on me and I went into a severe depression. One of my brothers unexpectedly died, which was a traumatic shock to all the family. However, the condition he died of was thought to be a hereditary one and we were all advised by the medical team treating him to seek medical advice ourselves to see if we were all ok. I did go to my GP and also for an appointment at the hospital to get this checked and thankfully all was clear, but apparently it is something that does need to be checked regularly. In 2008 I also suffered with terrible pain in my left shoulder which was made even worse by the fact I do have an underlying medical condition related to my spine that exacerbated the problem. I did seek out treatment and it was found that I had a tear in my tendon. My partner was made redundant around this time which not only caused financial difficulties but also brought about arguments between us, usually over money, but not always. My own freelance work had started to dry up, can’t blame it entirely on the global financial depression but I guess it didn’t really help matters. My partner and I both became very depressed and our behaviours toward one another became uncaring, disrespectful, aggressive and destructive. In 2009 my HIV doctor told me my results had got so bad that I needed to go on life-long medication. The very thought of this filled me with horror, I think partly because I had previously been on the drugs during the clinical trial and did not like their side effects and how they made me feel. My HIV doctor explained that my viral load had reached 500,000+ and my CD4 count had gone down to 210. I was also feeling very unwell in myself not just physically but mentally too. I felt in a very bleak, hopeless place and while I did not specifically think about suicide I was thinking about the more beneficial aspects to death. To me death was a place that offered tranquility, calm, was a peaceful state with no worries, or commitments, or stress, or arguments, or anything else that I did not wish to have to deal with at that time. So I agreed, not reluctantly, I knew it was the right thing to do, even in my very negative and hopeless frame of mind, to go on life-long anti-retroviral therapy. To be frank, I was petrified. Lots of questions were running through my head, what would the side-effects be like? Would I be able to stick to the medication regime? How do I manage my time around taking my medication? Who do I tell that I am taking HIV anti-retroviral medication? I remember the first evening and the first tablet I had to take, I was physically trembling while holding the tablet dispenser so much so that I dropped the tablets all over the floor. That I recognised as the last remaining action from my resistance to taking life-long medication and from then on my determination to be committed to taking and following this drug regime took over. One of the reasons for my willingness to comply was the fact that I am getting my HIV treatment for free. In some parts of the world people have to pay for their HIV treatment and in other parts people do not even have access to HIV treatment so it became a moral issue for me to follow strictly what I was advised to do.
In April 2009 I started my life-long anti-retroviral HIV treatment. It was quite simple to follow, a combination of three different drugs, Efavirenz, FTC (Emtrivia, Emtricitabine) and Tenofovir, all in one tablet called, Atripla which I only had to take one tablet, once a day, simple. While this tablet was easy enough in itself to take, I was advised to take it in the evening after a meal because some of the side effects it could cause would impair your ability to use machinery or make decisions. This tablet certainly did this to me, besides feeling very hot and causing my skin to become very dry, it also gave me diarrhoea and a feeling of nausea. The most disturbing side effects for me however were being light-headed, a feeling of dizziness and also a sense of being ‘out of control’ or dysphoria. I remember these side effects getting so bad that about an hour before I was due to take the tablet I use to start to become very anxious and concerned about taking it. I persevered and continued to take my medication and attended my regular HIV medical appointments at hospital but about a year after starting the Atripla treatment I was told, by my HIV doctor, that my results were showing that the virus had become resistant to certain aspects of that drug regime. Usually this can happen when compliance to the drug regime is not adhered to but I was certain I did comply and I even asked my partner if they thought I had missed any and they were convinced I hadn’t. However, during this very stressful time and period of getting use to taking life-long medication the village which we were living in had a terrible winter period with lots of snow and cold weather and as a result the village lost all its gas supply and certain houses (including ours) also lost their electricity supply, this resulted in a very miserable and considerably uncomfortable and cold living experience for several days in the run-up to Christmas. An emergency centre was set-up in the village social/sports club and at one point my partner was so concerned about the cold and the effect it was having on me that he even contacted the British Red Cross at the emergency centre in the village. The British Red Cross very kindly arranged for us to stay in a hotel for an evening. So maybe during this time the extreme cold weather and very stressful situation did mean that I did not follow my drug regime as closely as I should have done.
The virus becoming resistant to Atripla meant that I had to change my drug regime and to go on what was called, second stage HIV treatment. I remember sitting down with my HIV doctor and discussing the various options I could take, certain drugs were ruled out because of the resistant factor and those that were left my doctor explained what the side effects were likely to be from taking these drugs. So now I take, Darunavir, Raltegravir and Ritonavir and because of the dosage I need to take it means taking five tablets a day, one tablet in the morning and the remaining four in the evening. Touch wood, the side effects are no way near as bad, for me, as taking the single tablet Atripla but it does require a little more planning and adherence taking five tablets a day as opposed to the single tablet once a day.
Around this time I decided I wanted to turn being HIV positive into an asset in my life and make it something beneficial to both myself and others. I contacted the HIV charity, the Terrence Higgins Trust (THT), in London and applied to go on some training courses with them in order to become a volunteer. I attended their orientation course, their volunteer awareness training course and also their community support volunteer course. I passed their courses and was accepted following a CRB (criminal records bureau) check and became a Community Support Volunteer (CSV) with them. I attended several monthly support group meetings for CSVs where CSVs discuss the work they are doing and any issues that might arise from their meetings with their service users and any advice and guidance is then discussed at the meetings. Sadly a move further north meant I had to give up the volunteer work for THT but which then lead me to apply to become a volunteer for both Cornerhouse, a sexual health charity and Body Positive after successfully completing the foundation course in sexual health run by the charity Cornerhouse.
If anyone who is, or has recently been diagnosed, HIV positive is reading this account, then I would hope you will not feel frightened or isolated by being HIV positive. Be inspired and have the confidence to be accepting of your HIV status, to see being positive as something that could bring some benefit to your life, or to the lives of others. There are some great organisations out there waiting to help such as, ‘Body Positive, Hull and East Riding’, so send that email or make that call, it is confidential. The main message that I hope comes from reading this story is that if you are a person, no mater what age you are, 16 or 60, and your behaviour is not as it should be, with family and friends, and professionals, all telling you your behaviour is destructive. Or you have been told that the consequences of your behaviour could be very serious to your health or well-being, then it is time to seek out professional mental health support. Just because you can’t always ‘see’ the problem does not mean something does not need dealing with. You might have an underlying influence in your psychology that is making you behave the way you are. Again lots of places to get help, you could start with your GP and ask to see a counsellor, or you could approach some charities such as ‘Mind’ and they might help. You could also contact organisations such as the ‘UK Council for Psychotherapy’ who may be able to put you in contact with a to a trained psychotherapist. Finally your HIV consultant could refer you to see a psychologist. Having support for mental health issues can be a bit like going to the gym for your mind, or to put it another another way, it’s like having a make-over for your personality. It can make you feel empowered for now you realise, you do have choices in life. Take care.
My dear reader, thanks for sharing your story. I admire your strength.
Marlon/Marlife
