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I was diagnosed HIV-positive five and a half years ago. My husband had been ill for the previous 18 months, but not with anything they could put a name to. It was only when he went into hospital for tests to find out why he was literally wasting away that they found out he had pneumonia. More tests revealed it was PCP.
The night he told me that he was HIV-positive, I was relieved, which was a funny reaction. I thought that at least we had a name to his illness and he could be treated. Later on, I thought about myself and whether I was infected. We were both under the impression that I would be fine, as I looked and felt really healthy. But then the GP rang me the next night...
The following weeks passed in a daze. My husband developed an infection, which, combined with working and looking after our two children, meant nothing sank in.
I knew nothing about HIV, but not through complacency – I had seen the government advertising campaigns in the late 1980s, but I had been married for 18 years. Now, I had so many questions, so many fears. The emotions I experienced were so complex I couldn't put them into words. I could just about cope from minute to minute.
Meanwhile, my husband made a partial recovery but was given only weeks to live. I left my work to focus on keeping the family together for however long we had. A few months later, things had sunk in, and I contacted the George House Trust in Manchester. There I met the most wonderful, inspiring group of women. With their support, strength and experiences, I began to feel human again. Unfortunately, my husband died the following year. A few months later, combination therapy became available and suddenly there was hope.
When I was first diagnosed, the only thing I wanted was to speak to another woman who had gone through the same thing. So when I saw the position for regional coordinator advertised, I applied. I thought that if I could be of help to anyone I would, in a way, be giving back all the support I had received.
We have a very good support group in Manchester, and doing my voluntary work has made me realise how lucky I was to have that support. There are many women around the country who are isolated – through fear of being 'found out', through not knowing who to contact, because they are carers or mothers or because they have no transport or facilities nearby. That is why this work is important – I can be just a voice on the telephone, a point of contact as and when it is required or I can arrange to meet up with them, one to one. Then perhaps, when they are ready, I can introduce them to local support services. Everyone is different and their circumstances and needs change, but no one should go through it alone.
This testimony first appeared on the website of Positively Women. Thanks to both the writer and Positively Women for giving permission to reprint it here.