John White - living with the double diagnosis - HIV / AIDS and MDR-TB

It was in the beginning of 1986 when working with the church in Africa, that I was first diagnosed HIV positive. At that time this meant facing a death sentence, and I shortly left my work and home of ten years there in Kenya, and came back to Ireland to die.

That was 13 years ago, and I am still well and fighting fit! My "well-known secret", is simply that I refused to listen to the prophets of doom, i.e. medical practitioners, media etc. and decided to live with HIV/AIDS as opposed to dying with it. I intend to apply this same philosophy to living with MDRTB! I also set out to try my hand at working full-time with people with AIDS. After working for ten years at the largest AIDS organisation in Europe, based in West London, I was diagnosed as having contracted MDR-TB in October 1996. It was clear from the outset, that this had occurred in the line of my work. Six months previously one of my counselling clients had been diagnosed MDR-TB, and thereafter I had been constantly monitored by my hospital.

Here the nightmare begins! Here the greatest challenge in my 53 years of life began. Living with HIV/AIDS, was never any picnic, but living with an MDR-TB diagnosis was indeed something unimaginable, I assure you.

In short, I spent approximately one and half months in isolation in hospital in a negative pressure room, and after discharge, about six weeks in isolation at home, whereby I was allowed no visitors, not even the district nurse. I had to go to the hospital for my streptomycin injections, three times per week. Later I learned to give my own injections. Gradually I was permitted to go out walking, cycling etc., but had to avoid public transport, pubs, restaurants and so on. After some months, I had complete freedom, to go where I pleased, more or less, and was able for the first time to fly back to Ireland to visit my family.

I endured taking four major TB drugs, plus intra-muscular injections of streptomycin, initially every day, later three times per week for one year. The entire time on medication I suffered extreme fatigue, constant skin problems, lethargy, sleeplessness and lived with the constant fear that at any time I may again test positive, i.e. the current drugs may prove resistant. This would mean the nightmare beginning all over again. I realise those of you who have gone through this will have experienced much the same or even worse!

At this point I felt ready to get my life together again, and set out to seek help and support from within the HIV/AIDS organisations. However, I soon realised the irony, that for someone who had spent the past 10 years of their life providing services for people living with AIDS, there were indeed no services available for me. The fact that I might be deemed potentially a risk to others, especially those immuno-compromised, meant that no services could be offered to me. I certainly was excluded from attending any HIV/AIDS organisations, and could not even receive any support or therapies at home. This I could understand in the early days of my TB diagnosis, but after testing negative consistently for some months, I got the "green light" from my hospital, to freely go anywhere, even AIDS organisations to receive whatever services I required.

The first organisation to respond positively to my needs, was a small HIV charity based in Hammersmith (my borough), who upon checking with my hospital, freely welcomed me. However, larger HIV organisations were slower to offer services, and indeed the large organisation I had worked for with dedication for 10 years, made it clear that they still deemed me a risk, (despite many assurances from my hospital that there was little or no risk), and I was not permitted to enter their premises, or receive support or therapies at home. In fact they were the last organisation to allow me access to HIV services, and this only after much badgering.

This same organisation dealt very badly with the whole incident of my diagnosis. For a long time they denied that anything was happening. (A luxury not available to me, who had to live with this.) There was little real support offered to me and the initial periods of isolation made it easy for them to forget about me and the problem. I could count on one hand, the number of colleagues who offered me genuine support, and even of those few, only one remains in contact today. In fact after the initial flood of cards and calls, my colleagues quickly disappeared out of my life. It is quite a rude awakening to realise that most of those I would have counted as friends, were indeed "fair-weather friends".

For two years prior to my diagnosis, I had made constant appeals to my employers, to produce, define and implement a thorough policy outlining health and safety procedures when working with people with TB diagnosis as no such policy existed. My employers had known from the outset of my HIV positive status, and I voiced my fears that I may be at particular risk. I was assured by the management, that TB is not easily contracted! This I felt was not the case. Working conditions made the risk of contracting TB even greater, as the counselling rooms, were extremely small, windowless, and airless. In my last few months at work, I was protesting this, and eventually refused to see clients, in these rooms, having commandeered a small office with windows. At this time I was considering leaving my work there, as I felt the risk to someone like myself, immuno-compromised, to be too great.

Gradually there was increased pressure from my employers to terminate my employment with them, and they proposed that I take medical retirement. They decided that I may never be able to return to work, as they felt there would be a level of unacceptable risk. My doctor, and occupational health, at this time felt that I could indeed return to work provided that I not work knowingly with anyone immuno-compromised. They would continue to monitor me closely, and review my situation again in six months, whereupon, hopefully all restrictions would be lifted. This would have indeed been feasible, as much of my work as a counsellor was with people affected by AIDS, i.e. family, friends, partners etc. My employers refused to consider at least keeping my job open and still refused me permission to enter their premises. I refused to accept medical retirement, and lodged an appeal to Council of Management. This appeal was turned down. I considered taking a case for unfair dismissal, but decided that this may be too stressful, and detrimental to my health at that time. In my appeal, I had stressed that I firmly believed that deciding to work with people like myself, with AIDS, had proven instrumental in my survival and that to take away any opportunity to work felt like another death sentence. One may well ask of such "caring" organisations at this point how indeed they care for the carers

Early in October 97, having consistently tested negative for TB for one year, and having witnessed my T-cell count plummet to a mere 60, I decided to stop the TB medication. My doctor would have been happier for me to continue treatment for one more year but I was having to juggle the equation between extended TB treatment, and the ill-effects of this on my already weakened immune system. Luckily, the gamble seems to have paid off in that now sixteen months later I have remained well, and continued to test negative. In March Ô98 I received the "green light" to work with anyone, even people with HIV.

I have not yet returned to work, as I have had other health problems to contend with over the past year, and my relationship with my partner of seven years has ended during that time. The ending of our relationship, has been the greatest and most painful hardship of all. I would not attribute this break-up entirely to the trauma of being diagnosed MDRTB, but it was certainly of great significance in leading to the break-down of the relationship.

In conclusion, I was forced a long time ago, when first diagnosed HIV positive, to fight with the greatest resolution in order not to ever be considered a victim, or to fall into the trap of self-victimisation. The leper mentality is still around to some extent with regards to HIV/AIDS, and in my experience, even more so around TB MDRTB! I feel that AIDS ogranisations in general have responed very poorly, if at all, in how they manage the added difficulties and reality, of the very serious problem of TB in general, and MDRTB in particular. As in the early days of HIV it is the time to act NOW, whilst this threat can be contained relatively easily!