My first few weeks outside the hospital living with HIV-Self stigma, mental health, support ,self-determination and how it affected my life

Just a quick note to say that this is my story and some of the decisions I made, given another chance, I will do things differently and some others I will do same. However please as you read be aware that we each have our stories and what works best for us so please use discretion to pick what works and what doesn’t that will help you live a productive life regardless of HIV status. The aim is that you can have the life you want regardless of being positive. It may be challenging but it can be done.

So there I was in Asda shopping and feeling relieved. My normal life was in motion and I was having a wonderful time. I was happy because my dad was coming into the country for a medical check-up and I needed to pick him up from the airport. I left the hospital on a Thursday. Friday I stayed at home feeling very spiritual and on Saturday I headed to London on the train. I started having tingles on the left side of my body while on the tube in London and all of a sudden I started panicking. By the time I got to the waiting area of arrivals, I started feeling like I was going to have a stroke. I immediately dialled 999 and they sent someone out to check on me. The lady interviewed me and asked if anything had happened to me recently. I told her my diagnosis and she asked me to go back to the clinic for support. I told her I felt well before I came to London. At that point I was very worried that my dad would come out and meet me in that state. My dad came out in the end when it was all sorted and I didn’t have a stroke. We got a taxi going home and I remember suddenly having strong thoughts that I was going to die that night. I told my friend and she asked if I was okay I said I don’t know because I really didn’t understand what was happening to me and where all these sudden thoughts were coming from. I slept and woke up the next morning alive.

When my dad saw me, he asked if I was fine and I said I had a chest infection but I was fine. We got home and I kept trying to act normal. I couldn’t wait for Monday to go to the clinic. On Monday I got to the clinic and told them about what happened I was referred to social services for support ( the same service whose leaflet I had put in the bin earlier) By now I was having a steady panic attack and was literally shaking from anxiety. As I was walking from the clinic I suddenly became conscious of my slim frame and I suddenly felt that everyone must know that I have HIV because of how I look. All of a sudden I saw myself as the picture of HIV that was advertised in the 80’s looking like a skeleton, when people died of HIV. I was increasingly getting anxious and couldn’t wait to go to social services. I got there and told the support worker what was happening to me. I told them I wanted to see people living with HIV as I wanted to check if anyone else had gone through what I was going through.

The support worker reassured me and told me they will introduce me to some people soon. They also told me about coffee mornings for people living with HIV and I couldn’t wait to attend. I needed to speak to other people living with HIV as I was afraid of talking about HIV with anyone else. Only the clinic and social services knew (apart from my friend who I had to tell as I was ill and would need someone to assist me sometimes). While I waited, I was constantly having one symptom or another and I would constantly call the nurse to ask if I was okay, she said to me “you will have regular infections as normal and now you seem to be having a bit more only because your immunity is low (42) as soon as it starts to get better you will start to feel much better”. I couldn’t wait.

When the time got closer for the coffee morning, I started getting nervous and I was wondering what it will be like. What if I saw someone who knew me or someone I know? The support worker reassured me that it is a confidential space so I waited. On the day I went, I must say I was quite pleased to see other people; most of whom were well and only a few who had ongoing issues and were receiving treatment. I tried as much as I could to speak to anyone who was ready to be open as I needed to find out if some of the things I was going through were down to HIV or just plain normal everyday stuff. I was a little bit disappointed though because a small number of people were struggling to get by economically and socially although they were getting support from social services. So I settled for the group but something was still missing for me.

Meanwhile at home after two weeks of being discharged from the hospital, I was due back to work. I just had an appointment to start a new job and I remember asking my nurse if I was okay to go back to work. She then asked me if I had taken time off from work before I got admitted to hospital and I said no. I told her I had felt ill but I was able to manage work. She encouraged me to give it a try and only take time off if I felt too ill to cope, as and when required rather than taking a whole block of time off work. So I carried on. In between I was visiting the hospital. I was told I will be started on medication as soon my test results get back to see what would be the right fit for me. So I waited

At home I kept trying to act normal because I was concerned about my dad finding out so I would cook and clean and eat and watch TV even when I didn’t feel like it. When I was not around for a while my dad would notice and ask if I was okay and then I would reappear and continue to act normal. I must say that even though at the time it was physically, psychologically and mentally extremely difficult for me to do, that in itself helped me in quick recovery as I had little time to lie in bed, I would rest when needed but I was as active as I could be. When it was time to go back to work I did. I informed work that I just recovered from a chest infection but I didn’t tell them I had HIV. I remember thinking to myself “if I don’t go to work what reason would I give my dad?” And to be frank, I was more than tired of staying at home and needed a change of environment, plus being at work meant I was concentrating on other things and not thinking about HIV

So I went to work and had to walk an average of 1 hour every time, which was sometimes so difficult for me to do as I was weak and fatigued (but it helped me greatly as my much needed dose of exercise) but I said to myself “you cannot afford to let anyone suspect what you have” so I would literally put one foot in front of the other and when I couldn’t walk I would rest for a bit and then carry on. I remember one time being in the city centre and having to sit down as I had no stamina to stand. I remember looking at people walking past and thinking “I never knew that the ability to walk was health”. At the time all I was thinking of was “if only I could even just walk without getting tired so that I can do normal everyday stuff, I would be so grateful “(when I finally started walking without feeling tired, much later, I said to myself “I am healthy” and I was very proud of that and acted like a healthy person that I was)

One night I was in bed with my friend when all of a sudden I felt my heart beating really fast ,then I literally saw my heart popping out of my chest. I stated panicking and said to my friend I think I am having a heart attack. I asked my friend to call emergency and they came and checked on me. I was hyperventilating. I told them about my diagnosis and they reassured me and left when I had calmed down, after advising me to see my doctor the next day. I was so worried about my dad hearing any noise or my other friend whom I had not told about my status finding out but none of that happened and I eventually went to sleep.

I carried on trying to get my stamina back and started wondering if HIV had any effect on my mental health as I really didn’t understand what was happing to me anymore. Then the hospital told me medication was ready………………….TBC

4 Replies

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  • As a new user, I'm sad that I wasn't able to respond to this post earlier. Since it's been two months, I hope all is well! Thank you for saying, "The aim is that you can have the life you want regardless of being positive." Sometimes it takes a little nudging to realise that.

  • Hi njersey thank you for your thoughtfulness. I was diagnosed in April 2012 and a lot has happened since then. This was the story of my very early days. I have grown so much now, and still growing even though I have realized life is a process and ups and downs occur. I suppose now i have learnt to accept the unknown and take life as it comes while trying to make the best of it, the best way I can ...

  • it has also helped greatly being among peers. I have built and I still build my confidence from there. So thanks to you all :)

  • Quite a jorney. Wishing you well.

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