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The irony of a diagnosis

It is strange but I was quite relieved to hear I was positive. I will tell you why:

About 5 years ago, I was working in social care and was asked to do a health check to work on the hospital ward. I did a mantoux screening test for tuberculosis and I was meant to have a swelling but I did not, so the nurse said to me it could be a viral infection. Why don’t you have a HIV test? In a panic mode I went and had a HIV test and it was thankfully negative. I was given a tuberculosis vaccine and some tips on staying negative especially using a condom, which I heeded to….for a while.

I had a boyfriend then, whom I was seeing, but had not seen for a while as we were living in different countries. I saw him about 6 months later and we had unprotected sex because that is just what happens when I have been in a relationship with one person and I was not sleeping with anyone else. Moreover, I also assumed my boyfriend at the time was only having sex with me. Afterwards the relationship broke down and we each went our separate ways.

About a year later I started getting tired regularly but I put it to the weather. Then I had athletes’ foot and then dry eyes, bacterial vaginosis and then I found that I was starting to spend a lot of time at the surgery for one ailment or the other when I was usually healthy. I was asked a couple of times when I last had a HIV test and I told the doctor it was about a year ago but I had not put myself at risk since then (or so I thought at the time). I ended up being sent to a cancer specialist when all else failed because my CD4 count was low. I saw the cancer specialist and was told to do a HIV test at my surgery. It took another few months getting that sorted and in that time I was having more visits to the GP with more ailments. My skin was getting darker and I remember waking up every morning and thinking there is something going on with me. I started having sores in my mouth and my hair was falling off. I was referred to a dentist by my GP, who after seeing me sent me back to my GP and said he could not do much after prescribing some mouthwash. I kept going to the GP, seeing different GP’s and getting different treatments which worked until the next ailment…. I was feeling so frustrated until this day I went and the doctor I saw on the day said to me “ I can see you are scheduled for a HIV test would you like to do that?” I said yes and was bleed and told to ring for my results. I rang for my results when asked to and was told everything was fine. But then I was sick. By now I was really anxious and frustrated something was going on. I felt like my system was failing right before me and no one could find what was wrong. Then I went to work once and I had a fever. By the next day I had a sore on my back. I was back at the surgery and I remember breaking down in tears at the doctor and saying “what is going on with me? “ I was meant to be travelling in a few days and I was not feeling very well. I would be alight in the daytime but increasingly ill at evening/night and unable to sleep with stings from the sores on my back. I was given more tablets and told to try them and come back if it does not work. I went home and all I could do was cry and sleep. I was getting increasingly weak.

My friend suggested we go to A&E and we did. There the tears would not stop. Why are you crying my friend asked? I don’t know .I said because I really did not know. It felt like my tear glands were out of control. I was relieved though, that I was finally in a hospital. Whatever it was, they would know what to do with me. I was asked a couple of questions including when was your last HIV test and I said a couple of months ago. I was asked if I wanted to have another one and I said yes. At that point I was thinking that all I want to know is what is going on with me. I had a test and a lot of bleeds and later on I was told I had a respiratory tract infection. It was pneumonia and I would need to be in hospital for two weeks. I asked about the result of the HIV test and was told it was yet to come back so I settled in to the ward with relieve thinking finally I can start to get better now.

My first night in, the doctor came and said to me your results are back and they are inconclusive. To be honest, I had no thought whatsoever. I just went to bed. The next day I was thinking how can I have an inconclusive result? So when the doctor came for the rounds I asked how possible that is. I was told sometimes that can happen with faulty test kits etc. so I waited and was bleed some more. I was told they will need a few more days to confirm so I settled in. Later on the respiratory consultant came and examined me in bed for sores. I had none and never had any. She then said to me “ I am sorry but you have pneumonia and this particular pneumonia (PCP)you have can only happen when you are HIV positive. I am sorry but that is what it is” I must say I was thinking “what a b***” but thankfully it was in my head. I thought to myself that’s strange. So when did I become positive? the next day I asked what had happened and I was told that the HIV test at my surgery was never done because my GP had needed to sign but did not .

Well, I was shocked but I thought the great thing is that I now know what is going on and I was assured that I will be well looked after and will recover. So in between, I had some moments of downs and ups but I was in hospital for two weeks so somehow I got by. Then the specialist HIV nurse and pharmacist came to see me and asked how I was. I said I am fine, at least I am still alive and thank goodness HIV medication is available. So I am positive about my life. I said the good thing is I have realized how short live can be, and now I just want to live my life to the fullest because I have discovered that there is really no time to waste . I remember the pharmacist saying to me you have a very good attitude for a person so young. To be honest at that time all I was thinking was thank goodness now I know what is going on with me and I am on the way to recovery. I was asked if I had any questions and explanations were given me about CD4 etc and viral loads (which really did not make a lot of sense then but I heard them out). I asked what mine was and she said 42 so I asked what the normal range was and she said from 500. Wow! I thought and then the panic started. I thought will I be okay. She assured me and told me there are people who have had less at diagnosis but have survived. Where are they? I asked. You will meet them with time she said. She then gave me a leaflet for a social worker run support group which she asked if I would like to attend for support. I said no but took it anyway. When she left I put it straight in the bin thinking no way I am taking that leaflet home because anyone might see it and know I am positive. So I carried on in my hospital cocoon feeling very settled thinking about how short life is and how I would like to get married, start wearing more make –up, have children and everything. All the things I have been putting on hold, I thought I will get it all sorted. I found the bible on the bedside and started reading. In between I started having some episodes that felt very spiritual. I felt like everything will be fine.

I must say I was in a very happy place by my second week in the hospital and then it was almost time to leave so I was also told if they had their way they would start me on treatment immediately but I needed some test carried out first. I was assured as soon as the test results were back, I will start on ART to control the viral load. At that stage I was diagnosed with PCP pneumonia and I had cytomegalovirus viremia, iron deficiency anemia, mouth ulcers, chronic pantopenia, herpes, bacterial and fungal infection. I was given a big bag of medication. I was told I needed prophylaxis to prevent a repeat of pneumonia. So off I went thinking I really want to go shopping in town and get back to living a normal life. I remember it was a Thursday night and I was expecting visitors on the Saturday.

And so my life outside hospital admission began……..

2 Replies

Thank you so much for sharing your story, I am sure your strength will be an inspiration for others. Did you end up visiting the support group that was recommended by the nurse? After getting rid of the leaflet...


Sorry Simone I have been very busy. thanks for the question .I did access peer support which was and still is my lifeline. For me it's the manual of living with HIV as I have leant what to do and in some cases what not to do from other people's experiences. Sometimes I get perspective, information, meet people etc I will find time to tell you my story of finding peer support . Thanks.

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