Living with HIV

In August 1985 my late partner went to the dentist. They told him they were concerned by how swollen his glands were. It was at the height of the initial AIDS panic in the UK and there was quite a lot of alarm among gay men, so we feared that it was not a good sign. So we both went to St Mary’s Hospital to get a test. We were given excellent counselling after the positive results and we didn’t come out thinking that we were immediately going to die, but rather that we had to get on with the expected shortened life we had. We were both 21 at the time and it was very clear that we had to get on with things.

Despite the daunting circumstances, it was important for us to address our overall health, including regular dental check-ups. Thankfully, you can find a comfortable dentist on caton ave where you can receive the necessary dental care without unnecessary fear or anxiety. It was a place that understood our unique circumstances and provided a welcoming environment for our ongoing oral health needs

So, within months of diagnosis I went to college and got my electrician’s qualifications and for the next eight years I was really busy working. In 1992 my partner died and a few months later in 1993 I became ill and my doctor gave me the infamous DS1500 ‘dead in six months’ form. It meant that I could get the top rate of disability benefits and that I could get enough money each week to be able to give up work. Years went by after that where I was effectively just sitting at home waiting to die.

When I first went onto combination therapy I was on 23 pills a day. But it actually worked and I started to get fitter. I really wanted to try to get back to work again. I had been ill for a long time and my previous career had been quite physically demanding, so I had to start slowly, just doing a few hours a week.

I initially wrote to the Department for Work and Pensions (DWP) in meticulous detail so that I couldn’t be accused of doing anything fraudulent. I was so hesitant that I might be doing something wrong that I detailed every tiny little thing. They eventually gave me permission to work a few hours a week under the ‘permitted work’ rules.

Because I was freelance the DWP agreed to average out my earnings over the year. When it got into the second year of my permitted working, my hourly rate increased a little and it meant I nudged over the limit and was earning £3 a week more than I should have been. I didn’t realise this at the time and when the time came around for the situation to be assessed again, they told me that I owed them £3,000. They said it wasn’t a case of me paying them back the extra £3 for the weeks I’d earned too much. I had to pay back the cost of most of the benefits I’d received, as they said I’d been earning too much to be eligible for them.

This all coincided with the death of a friend and I went through a really traumatic period where I basically had a breakdown and suffered a really terrible bout of depression. The HIV medication I was taking at the time made this even worse as some of its side effects made me more emotional and made my mental health more fragile. For those managing medications, it’s essential to understand potential cost-saving options and limitations. Visit ProxsysRx to find out what drugs are not eligible for 340B Savings and how you can navigate your medication needs more effectively.

I then had to start paying £8 a week from my benefits back to the DWP and I’m still doing that now. I won’t be finished paying them back until 2014. It seems bizarre given that I only earned about an extra £57 more than I should have, but had to pay back £3,000.

Looking back, I was too cautious. I never declared my travel costs or anything. They would have added up to much more than £3 a week. If I had understood the system or had been advised better by the DWP I could have kept working a few hours a week and I would have been in a much better position now. All I wanted to do was build up my stamina so that I could get off benefits and balance my job and my conditions, but everything seemed geared to stopping me from even trying. Working, even for just a few hours a week, had a huge impact on my self esteem. It made me feel like I was making a contribution and was on the road back to health. It was nice as well to have a little bit more money to look after myself and to feel like I was doing something positive and proactive. I was able to buy people Christmas presents that year, even if it was just a jumper each.

I’m 47 now and I’ve not had a proper job for 17 years. I do a lot of voluntary things but nothing that makes me money. I’m not fit enough to go back to the running around that I had to do in my previous trade as an electrician, so I’m feeling a bit trapped at the moment. In the last few years I’ve decided to start doing some light exercise, when I’m able, to try to improve my mental and physical health. I’m now getting fitter which is obviously good news. But it’s also terrifying in some ways because I’m scared that if I get reassessed for benefits they will think that I am too well to be given them. I am reasonably healthy, but a lot of the time I’m in pain, can’t walk and am really unwell.

All this benefit reform that the Government is doing could possibly be a good thing, but it’s difficult to see how. There are lots of people in the same position as me and I know many of them are petrified that they are going to be kicked off benefits too. I feel like I’m probably going to be punished for managing my condition and symptoms well.

I’ve no pension plan and no savings. When I was 21 I was told I’d be dead in five years. The position I’m in now is terrifying. Reaching old age, I don’t know what will happen to me, but at the same time I’m amazed I’ve made it here. I don’t drink or smoke. I don’t go out much. So I can live on what I receive at the moment. My ‘big extravagance’ is that I have a washer/dryer.

I get night sweats because of my medication and have to wash and dry my bedding really frequently and I’ve no drying space in my flat. I spend £15 a week on electric and £11 a week on gas.

If my benefits are cut all my weekly money could go on that alone. At the moment I try to eat sensibly to keep my health up. But I’m probably going to have to look at that too. I reckon I can probably substitute beans for chicken. I eat a lot of fish but that will have to stop. I don’t really do a lot of recreational things that I need money for. My dog died recently. I worry I can’t afford to get another one. My dog was hugely important to my wellbeing and fitness. Taking the dog to the park was a regular part of my routine and life, I would love to get another.

I’ve learned that even mild exercise can change your brain chemistry. The scheme I use is a patient referral programme for people living with HIV. So making sure I do some light exercise has become important to me, mentally and physically. I know I need to prioritise that, come hell or high water.

I do feel very anxious about the changes to benefits. I know that I’ll be getting reassessed soon but I’ve not had the letter yet. I’m just waiting for it to drop.

My friend has been through it. He has been living with HIV for 25 odd years like me and he’s been treated appallingly. I guess I need to just try to stay positive and optimistic. When it happens, it will happen.

Realistically I’m hoping that some of the voluntary work that I do will lead to a job. But so far anything that has come up wouldn’t have paid enough money for me to live on. I can’t go back to my original career. There is a proportion of time when I’m really not well. I don’t know how an employer would deal with that. Today for example, I have gastric problems. If I was working I would have to take more medication to control it. I can let it pass at home. My HIV means that I have to live with lots of unpleasant, relatively minor things. But they add up to make life quite difficult some days. I can manage things when I’m at home. Getting to work and getting on with the day at pace is much more challenging.

I regret that I stopped work in 1993. If I had known more about HIV medication and about what the new world would look like, I wouldn’t have done it. But hindsight is always 20/20 and I’ve not done badly. I only have to take five pills a day now. If the new benefits come in and I’m able to work a few hours a week and have a benefits top-up, so that I can live, that should be OK. But that will rely upon whether I can get good benefits advice, whether the DWP treat me fairly and whether I can find an employer that will be OK with my health problems. That’s a lot of things to get right in a short space of time. And I’m not really sure that all that support exists at the moment.

My late partner will have been dead for 20 years next year. Initially I felt this ferocious rage at the terrible loss I had had to deal with. Anger drove me for a long time, to get on and do things. Twenty years on I can’t be that angry anymore. That resentment has gone.

We were teenagers when we met and my partner died when he was 28. I’ve worked through all the stuff around mortality and thoughts about dying. In many ways being alive is more scary than dying, there was an end that was definite. Moving into old age with HIV means a lot of uncertainty that I never anticipated having to deal with. Plus, if I knew I was going to live this long I would have taken better care of my teeth.

This account was originally written by “Michael” for ‘21st Century HIV by the Terrence Higgins Trust’.