In a moment of weakness we carried on anyway!

Megaphone

I went to get tested because someone with whom I’d had sex with contacted me to say he’d recently tested positive. He had been a risk - the condom split and in a moment of weakness we carried on anyway. He advised me to go and get tested myself. So it was on the back of him getting a positive diagnosis just through routine testing, and for me the diagnosis was unexpected and out of the blue. I was 27 at the time.

I went for my test knowing I had been at risk and this experience was tiring and stressful. When I got tested the staff at the sexual health clinic were kind, helpful and accommodating - sympathy and advice, not judgement. They were pretty clear about the level of risk that I had. They made it clear that it was not guaranteed that I would become positive, but that I had been exposed by someone who had recently contracted HIV so that makes it a higher risk since the virus in their body is at high levels.

I felt a sinking dread at the point of diagnosis, I had been tested on a Friday so had the whole weekend to stress and worry about the results. At the end of the day on the Monday I called the clinic and asked for results over the phone. I felt that (thankfully rare) woeful feeling when you’ve spent lots and lots of time imagining every scenario, good and bad and it happened to be worst suspicions confirmed.

So, it wasn’t a surprise really, I had geared myself up for it but it was still a shock. It wasn’t a slam-in-your-face shock since I’d had so much time thinking about possibilities, but it did still feel quite shocking and quite a bit of bewilderment. It was like, “Okay. What do I do next? I don’t know what to do or how to feel or how to go through this”

Health care has been absolutely fantastic. People bitch and moan about the NHS all the time but I have had nothing but positive experiences when dealing with my sexual health care and all the other bits-and-bobs that have been going on with my health; even referrals to GPs and things like that. Whether it has been my imagination or whether it is the case I think the GP seems to pay a bit more attention to me now than they did before. Everyone else has been willing to go to the extra mile, whereas before it might have been, “Come back another time” or “take two Asprin and see how it’s going” everyone seems to be more, “sit down and lets get to the bottom of this”, paying attention to what I say.

I’m a bit Captain Contingency

Megaphone

I have told a fair few friends about my HIV status

I have quite a few people whom I am close to, and because I had had a lot of unrelated health concerns, being up and down with glandular fever, this was another thing piled on top of that. I wanted them to know I would be ok.

It felt quite good to be able to get it off my chest and talk about it. Every time I was able to talk to someone new about it, it was going over the feelings & thoughts again for me and iterating through dealing with it, exploring how I felt about it, it felt like each time I was able to process and get to grips with it a little bit more.

Telling my partner, whom I met not long after being diagnosed was a strange and different experience. I umm-ed and arr-ed and worried about it, and spoke to some support agencies for advice, because it was not something I had thought I would have to deal with so soon after being diagnosed. I thought it would be something that would be far off in the distance, not months after being diagnosed, but I seemed to be plunged in head first.

Telling him was actually really good and rather unexpected. I had imagined and anticipated a lot of scenarios including questions that he might ask and how he might take it, but when I did tell him, his biggest question and concern was for my health, not about the risk to him but all about me. I hadn’t anticipated or expected that at all, so it was really sweet, kind and disarming to be able to say “I’m fine and I’m not going to drop dead any minute”

I guess that condoms are more on my mind than they once were. I am a bit ‘Captain Contingency’ so I have to always have condoms & lube there ready, just in case. I guess I think about it more, but I’m probably no more extra prepared than I used to be. I have always been quite good at remembering condoms and being prepared. I am looking forward to trying out a whole range of condoms, I didn’t realise until after diagnosis just how many options there are.

It feels Like I have One Strike Against my Health

Megaphone

This is the question everyone wants to ask, ‘What does it feel like to have HIV?’ They feel they should not ask for fear it’s a stupid question.

For me, a year and quarter after diagnosis, it’s still relatively early days on my journey living with HIV, but there are definitely 2 things that come to mind about how it feels:

It no longer feels scary or frightening, but feels like a background responsibility in the same way unfinished work or unwashed dishes do; something that is always just in the back of your mind as a very low-level burden, demanding occasional attention. It feels like an extra responsibility that I’ve taken on (and will have to consider to some degree every day for the rest of my life); while it’s not a huge stress and doesn’t demand all my focus all the time, the fact that the consequences (to me or someone I care about) are potentially so major means that when an HIV-related situation (health, sex life) does crop up, I do properly think about it.

It feels like I now have one strike against my health; HIV won’t kill me, and the next serious or long-term condition I’m faced with probably won’t either. But it might give me a second strike against my body, and then there really will be no more safety net. I can’t feel complacent about my health, or risk pushing my body too hard anymore, because I don’t have that spare strike to spend that most of my friends do... becoming diabetic or contracting hepatitis-C would be serious but manageable for them, it would be very dangerous for me.

I don’t feel worried, but I do feel cautious now when it comes to my body and health.

I was relieved to get a diagnosis

Megaphone

I was diagnosed in 2004 after a serious lung infection for which the initial cause was a mystery. I was tested for many things including TB. The HIV test was the last thing that my consultant thought of as I didn’t fit the expected profile for someone who would have HIV.

Initially I was relieved to get a diagnosis after many months of ill health. Although I knew it was a fairly major condition, I also knew that it was controllable and should not prove to be fatal.

Since being diagnosed I have had a few illnesses such as shingles, chicken pox, bells palsy and cmv retinitis and Hep B.

The care I have received both from my HIV clinic and the other consultants has been extremely good. The consultants have all worked together to keep me in robust health, despite having a CD4 of only 120.

When I was diagnosed I made a choice only to tell one of my brothers and one close friend. Both of them have been supportive and my sister in law, who was also told, has taken the time to learn about my condition, so when I talk about my HIV and blood results she fully understands.

When I was diagnosed I was single and decided that it would be easier if I had a partner who also had HIV. I looked on the internet and found several dating sites specifically for HIV sufferers, and have met several people through these sites. Some of these became partners, some of these long term friends.

Recently I have become involved with someone who is not HIV positive. and I am currently going through the decision of when to tell them about my situation.

I will make a cup of Tea

Megaphone

I was diagnosed in 2003 but was told that I had probably been positive for a good 10 years, which sounds about right as I had contracted HIV from my partner of 5 years. HIV ruined our relationship because he could not cope with the HIV as his ex partner had died from AIDS.

I got tested because I was very tired. On one occasion I has slept in a lay-by for three hours having pulled in just for a little rest. I knew that there was something wrong. I became ill quite quickly and developed Kaposi’s sarcoma which is a skin cancer.

When I was told I was HIV I didn’t react in any way as I was expecting it to happen, and I just carried on with my life in the best way I could. My initial thought was ‘ Well I was expecting that’, so it was no surprise. I was sad of course, but all I could do was carry on as normal, the best I could and do as my doctor at the sexual health clinic asked me to do regarding taking meds etc

I was off work for 6 months. I had to tell the HR department at my work who were very understanding, but a year later I was selected for ‘voluntary redundancy’ although I was an excellent worker and had not had a day off in 7 years. I wonder if my HIV had anything to do with this?

I told my 71 year old mother who was, and still is, supportive and looks after me very well. When I told her she said ‘Well let’s stop crying, I will make a cup of tea and it will all be alright’ and it has been.

As for my brother and his partner they guessed I was HIV although I have never confirmed it to them. They were very cutting and spiteful and me and mum and have cut them out of our lives for three years meaning that mum never got to see her grandchildren. My brother is back in our lives now, he has a new partner and life is good, we get on well and HIV has never been spoken about since.

I have been very lucky as I have never had any problems with my medication. I have never had any side effects, I am one of the few people I know who hasn’t. I have never missed taking my meds nor have I ever missed an appointment at my HIV clinic. It is very important not to. I do as I am told by my HIV doctor and I carry on as normal.

It’s just a shame that folk still cannot talk about HIV, there is still a certain stigma about it.

My advice would be: Be as safe as you can when having sex. Have an HIV test once a year as it is better to know in the early stage rather than finding out when you fall ill. At least you can keep it in check with meds.

Why would you want to take something that will make you feel worse?

Megaphone

Initially when I got diagnosed I thought, ‘You have really done it this time and there is no going back’. It’s not like having an STI that can be cured this one is for real, and for a couple of weeks I didn’t really think of anything, I just blocked it out and carried on as normal.

All my experiences at the Sexual health clinic with regards to my HIV care have been very good, I have had no bad experiences. The consultant always explains things as best he can and if there is anything that I still don’t understand I clarify that with other people.

My GP also knows and they are fine about it. They were pleased I told them just in case they prescribed any drugs that might interfere with my HIV Meds. I think I get appointments more or less straight away with my GP. I don’t know if my name flags up on their system, but I can call in a morning and get an appointment in the afternoon which is great.

The first time I got the meds I read the leaflets inside and thought, ‘Why would you possibly want to take these tablets that could possibly make you feel 10 times worse than you already are feeling now?’ and I nearly didn’t take them at all. It was my siblings who said to me ignore the leaflets and take the meds. Initially I was unwell for about a month of taking them, feeling sick and tired but that soon passed. Compared to how some people have reacted to their meds it was nothing really.

I have been on the same meds for 2 years with no real problems.

I think that once you start taking the meds there is no secret to remembering to take them. You know you have to take them so you just take them, you cant really afford to not take them.

I had been working in Zambia

Megaphone

In 1990 I got tested for HIV at a sexual health clinic in Fulham. I had been working in Zambia and had a brief affair with a man I worked with. At the age of 18 I was told I could not have children, so I had never asked a man to wear a condom. I didn’t know how to ask the Zambian man to wear one, plus he looked healthy and I naively thought HIV was more a problem for gay men.

When I came back to London a friend persuaded me to get tested. I was working at the Conran Shop filling in for the display manager who was off sick with, of all things, AIDS.

When I phoned to get my test results, I was told I had to go to the clinic. I immediately knew it was not looking good. The clinic were very kind, they told me I probably had eight years to live if I looked after my health, gave me a leaflet and the number of Positively Women. The next day I went back to work but I never felt the same again. For a while I felt very separate from the world around me, I was suddenly an outsider. And although it has since become part of who I am, the burden of secrecy and stigma means that I can never return to the me I was before that day in the Fulham clinic.

The first six months of starting ARV’s, (Anti Retro-Virals), were the worst, with nausea and anaemia, strange dreams and for a while I was sensitive to sunlight, which was hard to explain at work since they knew I used to live in a hot climate.

I am very adherent to my meds; I promised this to myself 10 years ago and I only miss one or two doses a year. Every night I put the pill on a glass dish and take it just before I sleep. If the glass is empty, I know I have taken it. I have forgotten what a medication-free life is like.

Last year I had to come off meds for six months. I felt vulnerable, anxious and unwell. My viral load shot up and made me feel ill. It is the only time I have felt unsupported by GUM. But my consultant and the clinical nurse have been wonderful. I have become so used to the relationship they have built with me,that I was taken aback by the impersonal nature of clinical reviews that I have experienced in other hospital departments.

When you have HIV, there is more emphasis on how you are as a whole person and if you want, there is more opportunity for self-advocacy. The history of activism in HIV treatment has encouraged people living with HIV to be experts in their own care.

I just went down to the beach, it was a lovely day.

Megaphone

I was 26 at the time that I got tested and living in Brighton. My boyfriend was away on a trip at the time I got tested. It wasn’t a shock to me at the time because my partner had been recently diagnosed with HIV. I just went down to the beach, it was a lovely day. I stood there taking photographs of the sea and the sky. I thought “That’s it; I’m going to die. I’m not going to have a future”.

When the Health Advisor told me I was just cold and numb. I felt like it was a death sentence. Images ran through my mind of men with tumours all over their bodies and that was how I was going to end up.

The first medications were terrible. I was fit and toned and muscular at the time and the medications stripped me of my body. I got peripheral neuropathy in my hands and feet. I started to walk funny and I would fall down the stairs. I had diarrhoea, weight loss and I couldn’t sleep. I went to see a neurologist and decided to take a break from the medication.

I had about one and a half years off work as a result of the side effects to the medication alone. After I became more stable my health improved and I was able to return to work. However, I suffered from nerve damage. The first three years were really negative. Now I am stable I feel like I have a future, like my life has been extended.

I was with my partner (who I caught HIV from) for about two and a half years. I think guilt split us up on his part and anger on mine. Then I met someone who I was with for 10 years. He was negative when I met him and he still is. In the end though he was sick of me being ill all the time.

My advice to anyone who is, ‘Don’t get lost in all the hype about medication and the “it’s all fine” attitude. The psychological aspect of HIV is terrible… it’s a different life.’

I mucked up the treatment as soon as I started it.

Megaphone

I started meds six months after my diagnosis. My CD4 count had dropped from 216 to 164 (which was up to 750 in early 2012) and my viral load was over 25,000. I sat down with the Dr and went through all the ins and outs of treatment.

The irony is that I mucked up the treatment as soon as I started it. I was taking the wrong pills at the wrong times. The side effects were interesting; it was like I was drunk for two hours every time I took them. This went on for a couple of weeks too. I still have very vivid dreams (which I don’t mind at all) and I used to get diarrhoea sometimes too, but since I quit smoking and changed my diet it’s all fine now. Luckily I’ve had no other side effects.

I remember going for a drink at Gun Wharf

Megaphone

It was 2004 when I got tested. I had gone along because I had an NSU and when I was at the clinic they asked me when the last time I had been tested, it had been a few years, so they suggested that I got tested. It seemed to make sense to do it. And funnily enough I almost knew, I had like a second sight about it. My partner at the time even came with me for the results which they didn’t normally do, and I got called into the room and it almost felt like a death sentence really. I still can remember friends die from HIV. Really my knowledge of HIV was still in that vain that it was a death sentence. I hadn’t really kept up to date with my education, the latest med or anything like that. So the only thing in my mind was ‘this is it!’. My partner was then called in the room and it all felt a bit clinical at the time. The person that gave the results said, ‘you will be seeing a lot of us’ and one thing they said at the time which really sticks out was ‘get a good dentist’, which seemed bizarre at the time.

I remember going for a drink at Gun Warf in Portsmouth and me and my partner looking out over the water and being very tearful about it and my partner saying ‘What am I going to do without you?’ I was trying to be upbeat about it and saying it is not what it used to be, but all the time feeling that ‘this is it’.

I feel very different now, HIV changed a lot of things for me. It changed my relationship, I had been in a long term relationship for 15 years when I got diagnosed. We went on for another 4 or 5 years after my diagnosis but the relationship really changed because my partner and I suppose something changed for us. We had an open relationship but I guess I had over stepped a mark.

I always had to have the last Appointment

Megaphone

When I got my HIV results one of the things I remember is the person that gave the results said, ‘You will be seeing a lot of us’ and one thing they said at the time which really sticks out was, ‘Get a good dentist’, which seemed bizarre at the time.

I can’t praise the sexual health clinic enough, the staff are fantastic and my clinical nurse specialist is just out of this world to be honest with you.

I was in the vain that all the time I was not taking medication everything would be fine and that I could just keep going on not taking medication. When I eventually had to start, that was another watershed in so many ways. Saying that, I didn’t have any bad reactions (excessively) with the medication and very quickly my viral load became undetectable and CD4 was 500 plus. I have always been very good with taking my medication, my adherence has always been around 100%

I had a bad experience with my dentist to be honest with you. I made a decision to tell all my health care providers, my GP was superb, just so supportive. The dentist was ok, but I always had to have the last appointment, which got up my nose a bit really, because it was sometimes difficult to have to have the last appointment of the day. I just thought, ‘Hang on a second; I have declared to you, you know about my status, exactly my circumstance. There are people out there you are treating who don’t know that but you are singling me out for preferential treatment’. I just couldn’t understand that because they should be treating everyone else the same, but you just have to go along with that. I have subsequently changed dentists, they know the score and they don’t treat me any different, so that was the only negative thing that has happened to me.

I have no regrets

Megaphone

It was an immense relief to tell my children. They are old enough to understand, they were in their 20s when I told them. They were great. My daughter doesn’t ask all the time but asks if I am okay and they are always there really. I have no regrets about telling them and just felt I had to, just in case anything happened and then at least they could understand.

I told my nephews also, and it feels to a certain degree easier with them knowing because if anything happens then they can cover.

I decided not to tell my parents because they are quite elderly. My mother died about 4 years ago and she never knew. My father may have got a suspicion because he knows I go to the hospital every 3 months and has seen the big bag of meds that I get, but he doesn’t ask and I think it’s best that way.

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