Healing the Stigma of HIV Starts With Us, the Diagnosed Ourselves

This post was originally first published on the Huffington Post on 19/11/2015 by Edward Pike

Despite the huge evolution of treatments, there still exits a big stigma surrounding the condition, not least in the diagnosed themselves. But as Charlie Sheen’s recent disclosure shows us, only when we find acceptance of our own condition can the world begin to fully heal its perception.

When I was first diagnosed with HIV 6 years ago, I knew nothing at all about it.

So on that fateful day in August 2009, I was - like a lot of people - completely blind to the modern developments about it, and was instead hypnotised by old stories: I vaguely remembered images of people getting terribly sick and eventually dying, cared for by friends while their families rejected them in disgust.

A particular vivid memory was of a comic book in my family doctors surgery, about a young, beautiful blonde girl whose life turned upside down after going down the dark side of drug use and eventually dying a lonely and painful death.

In my mind, HIV was the poster-child of promiscuity and drug use. A belief which still seems to be the case for many, as the recent scaremongering headline from the Sun mirrored the outdated 80’s scare tactics of sexual health campaigns.

With my own diagnosis, I was forced to come face to face with my ignorance about the subject, and with my deep held fears about belonging, mortality, love and health.

You see, HIV can trigger a lot of deep-held fear, anger, guilt and shame. Age-old questions, common to every single human (and especially to every single gay man), get heightened: “Who can I trust?” , “What will people think of me?”, “Will I find someone who will love me?”.

Without care, this leads to self-destruction, depression, anxiety, and a loss of aspiration and self-care. But with proper support, it can be a time for people to explore their deep-rooted fears and beliefs, and be the start of a profound transformation.

Having mentored many HIV+ gay men and met many more, I am always astonished by the number of people who recognised that being diagnosed turned out to be the start of a journey of inner growth. Even for myself; my diagnosis was the start of my own path of self-discovery, of reconnection with my deeper self, and led to me today living a life of purpose and fulfilment.

This is the main driving factor behind the Thrive Foundation: to help gay men with HIV identify and heal their own stigma and create healthier and more fulfilling lives. How? By teaching them to reconnect with their bodies, emotions and intuition, and aligning their lives with their inner self.

Sadly, this kind of approach cannot be offered by the NHS, since ever-greater cuts hinder its ability to provide appropriate mental and emotional support to patients with long-term conditions such as HIV. But there is a clear need for heart-based, community-led initiatives such as Thrive: we have received a lot of support from within the LGBT community, including from gay activist and actor Sir Ian McKellen.

6 years ago, when the nurse told me I was positive, I thought I would be carrying the weight of the world’s stigma on my shoulders forever. But what I’ve realised is that letting go of this weight is the key to living a fulfilling life: by learning to understand and accept myself, I’ve learnt to understand and accept others - and connect to people and the world around me at an even deeper level than before.

And I believe that this is the key to changing the world’s perception of the condition: it starts with us, the diagnosed ourselves, learning to go deeper with ourselves and heal our own wounds around our HIV. So when Charlie Sheen decides to go on the Today Show to share his experience with HIV, I can only commend him: by taking control of his story and sharing his deepest truth, he is finding a new acceptance of himself. And only then, can he (and we), heal our wounds and begin to write the story that our hearts long for.