Living with HIV Long-Term

HIV Long-Term Survivors Awareness Day falls on June 5th for a reason - in 2021, it'll be 40 years to the day that the US reported its first five cases of AIDS. With the advent of effective treatments, there are now people who have been living with HIV for decades.

The aim behind HIV Long-Term Survivors Awareness Day is to honour those who have been living with HIV for a longer period of time and to raise awareness of those people’s needs and their journeys. One of these people is Paul Blatchford, who has been living with HIV for nearly 20 years. We spoke to him about his experience, and asked what he'd like us to learn about living with HIV long-term.

Would you like to tell our readers a little about yourself?

My answer even surprises me.

I was born in the mid 1960's into a very homophobic family and society.

Showing signs of being gay from a very early age, I was told, and grew up believing, I was unworthy, an embarrassment, that I would never amount to anything, and didn't have a place in society.

I'm giving you the abridged version. I also knew that meant I would never be married, be a father, have a family of my own, a career, or life of any note/purpose or importance. That was, therefore, accompanied by no self-confidence, no self-esteem, or self-worth.

I asked nothing from life and expected even less.

Fast forward 50+ years, I am a husband (to the most awesome man I've ever met!), a grandfather and, soon to be, great-grandfather. My husband and I have been together nearly 20 years, and I continue to fall more in love with him with each passing day.

Though I struggled with what my purpose was for most of my life, I'm pleased to say I’ve found it.

We often wonder when life seems to deal us a bad hand, "Why me?". I remember my daughter saying to me once, "I'm so sorry for everything you went through. How do you make sense of it?". But it's what we learn from it. How we use it to better our own lives, and that of others. I told my daughter, "It brought me here, to you, and you are one of the most amazing things to ever happen to me".

About 7 years ago, I decided to take my pain and what I’d learnt, find my voice, and use it to ensure others don't go through what I did. I found myself becoming an advocate for HIV and mental health through charity work, as an advocate, and public speaker with the Positive Speakers' Bureau (PSB).

I have surrounded myself with people who inspire me, and erase negative energies from my life. I'm living my best life.

What is one thing you would like people to know right up front about what it’s like to live with HIV today?

HIV is not the death sentence it once was. It is a manageable illness. When on meds that are taken regularly, the person with HIV will become undetectable. It cannot affect them anymore, nor can it be passed on to anyone else. Undetectable Equals Untransmittable (U=U).

Also, and this is very important, HIV is not “a gay disease". HIV does not discriminate. People do. Many of my personal heroes are women living with HIV.

How long have you been living with HIV?

Nearly 20 years. It was still considered a death sentence then. Doctors and specialists were more focused on making sure your "affairs were in order" and planning your funeral, than healthcare. They were scary times.

What changes have you seen in both the HIV response and in the medical side of things over these years?

I've been in awe of the advances made in the past 10 years. Especially in HIV advocacy, education, medications, and quality-of-life of those living with HIV.

I was given a life expectancy of 3-5 years.

I've now been HIV+ for nearly 20 years. Undetectable for 10+ years. I'm 57 now, and expect to live a long, and very happy life.

When the NZAF first proposed the slogan and goal of Ending HIV transmission by 2025 I felt it was a very lofty goal. “Unreachable, but it's nice to have a goal,” I thought. Now I absolutely see that as being achievable.

That's where HIV education is so important, nay essential. As a speaker with the PSB we reach out to the wider community, outside of the Rainbow community. Universities, DHBs, medical schools, corporations, public events and more. Often, we’re speaking to people who have never met or spoken to someone with HIV, and with little knowledge of HIV outside of untruths and stigma handed down through generations.

Are there any needs or issues you have seen that aren’t being addressed for people living with HIV long-term?

Despite the stigma and discrimination that I still feel sometimes, even within our own communities and families, I think we (long-term survivors) are just grateful to be alive, and in relatively good health. Many, like myself, are dealing with ailments that come with getting older. And I embrace them.

I worry more about the complacency of younger generations. I worry they don't feel the need to educate themselves about HIV, or the amazing heroes that helped us achieve what we have achieved in the field of HIV, the education and awareness.

I was speaking to a friend in Australia who has been living with HIV for over 26 years. They said they did feel invisible and like they didn’t see a space made for them in the response. Which got me thinking about where people with long-term HIV, who have so much knowledge and relevant experience, should really be involved.

When a child loses a father, there are services that find them a “Big Brother”, services like this help people feel less isolated, frightened, and alone by connecting them to others who have experiences and understanding in the area. There could be something like this for newly diagnosed people and people living with long-term HIV. Usually, people are connected to counselling, which is valuable, but the counsellor is not often living with HIV. This “buddy” with long-term HIV idea could help bridge that gap and provide community, guidance and support to both people – while also helping to make those older voices more visible. I understand Body Positive's Peer Navigator service works along these lines - and I hope more people make use of the service and raise awareness of it.

What would you like people to know about your experience of living with HIV as you get older?

Although I am openly HIV+, it doesn't define me. I’m happy when people don’t focus on my HIV, or see me as a “disease”. I think more about the many friends I lost to HIV/AIDS and hope I make them proud. I do what I do to honour them.

I want people to know that HIV does not limit my life in any way. I live a humble, but full and wonderful life. I have my own family, which my husband and I built together, which is not defined by genetics alone. Our HIV doesn’t define or limit us, or the relationships we have. We just want to be treated like anyone else.  

Is there anything you’d like to say to young folks who have been recently diagnosed with HIV?

Take your meds regularly. This will ensure you stay undetectable. It’s the next best thing to a cure, and that’s coming soon. Live your best life. Surround yourself with positive people who support and encourage you.

If you need a “Gay Dad/Gay Uncle” figure to talk to, get in touch with me, or talk to another HIV Long-term Survivor. You will be inspired and find strength.

Ask for help. There’s help at hand.

Don’t let your HIV define or limit you. Dream big. Take steps to achieve those goals.

Stand proud.

HIV stigma is still prevalent in New Zealand - what’s one first step that every Kiwi could take to start dismantling HIV stigma?

We don’t see much of the blatant, vulgar, aggressive, discrimination we once did. It’s more subtle, and often more due to handed down misinformation that has become misinformed “fact” over time. But that is just as dangerous.

Feel free to talk to us about our HIV. You will be enlightened. Have open and honest conversations about HIV. HIV should not be a taboo subject. Our best defense/offense against HIV stigma is education. It is our goal as PSB speakers.

I haven’t gone into high schools or colleges to speak, but I’d like to, and I think that would be a good thing. Talking to the next generations would be a step towards normalising conversations about HIV, and helping to eliminate stigma and discrimination.

Is there anything you’d like to add?

More has been achieved in HIV health, and we are closer to finding a cure than in just about any other medical field, including Cancer, Parkinson’s, Alzheimer’s, etc.

We’ve come a long way. We’re winning the battles, but we haven’t won the war. But we will. But even a cure for HIV won’t end the stigma and discrimination. That fight will continue.

It sounds strange to say, but I am grateful to my HIV. It has shown me the worst in people, but also the best. Through my HIV, and my advocacy work, I have met the most inspiring people. They have changed my life, and I am a better person for it.

Paul Blatchford is a Community Educator for the Positive Speakers' Bureau (PSB). PSB empowers people living with HIV to share their stories, raising awareness and improving the knowledge and understanding of HIV throughout Aotearoa.

If you would like to have someone from the PSB come and speak at your workplace/school/event, reach out through their website here - this is a free, nationwide, service.