Nicholas, aged 40, London

Learning the value of my own life through my HIV diagnosis

"HIV saved my life. Had it not been for HIV, I would have completely disconnected from society and I would have died on the path I was on. The only thing that kept me alive was coming back to the clinic to get my next round of HIV drugs. Through this I was able to be referred to other services for other conditions. This was the only thing that kept me going at some points and that taught me to value my own life for once.

I’ve been on a destructive journey. I used party drugs and once I got diagnosed with HIV, my drug use went from recreational to full blown addiction including injecting crystal meth. I have been in drug treatment twice, have relapsed three times, and have contracted Hepatitis C twice. I knew I was having problems with addiction, and I remember going to my GP and getting a referral to mental health services. I saw a social worker, a psychologist, and a psychiatrist all in succession, and at the end, they said “Oh this patient has so much insight. We will give him some leaflets and discharge him”...a year later I was diagnosed with HIV.

I have had a lot of battles accessing treatment. Without my HIV doctor, I wouldn’t have had access to other types of secondary and tertiary care for a range of conditions from hepatitis C to tinnitus to skin cancer. My HIV clinic has been the hub for all of this, not my GP practice where I found it was challenging to access a lot of care I needed. I know my HIV doctor went well beyond her call of duty to get social services to actually put me into residential rehab to treat my addiction when I thought suicide was the only answer.

My mental health is still an uphill battle. Now that I have stopped using drugs entirely, the underlying mental health issues that were there all along are now bubbling to the surface. The fact that my mental health needs are not being met means I am unable to get back to work and fully participating in society. I have felt as if I am in a sort of holding pattern.

Dealing with access to welfare benefits was probably the worst experience of my life. I was in residential care at the time due to my addiction. At first my application was rejected so I had to appeal and go to tribunal with a voluntary barrister. The other conditions I was managing at the time had not been properly considered. There is a relationship between pain, discomfort, and all the other unmet needs I have as well as being a person living with HIV. I know a lot of people who are so dismayed by the benefits system that they give up and choose to suffer hardship. For me, quality of life means managing fear. Most of my fears centre on financial security because I am living on benefits from a hostile system.

HIV became this sinister character in my life that I battled with. In the beginning, I knew about and experienced stigma, but I also stigmatised myself. HIV had a grip on how I cared for myself and for my own self-esteem. But today, I have accepted my HIV as part of me, achieved 70 per cent abstinence over two and a half years and feel resilient enough to tell my story.

Click here to go back to Our Stories