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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