Few of us are willing to be open about our HIV status. Is this because we believe most people’s knowledge and attitudes are 15 years out of date? Here Chris Sandford, a patient representative at the Bloomsbury Clinic, Mortimer Market Centre, ponders what it’s like telling people we have HIV.
So should we tell? If we were all open about our status, we would avoid speculation, gossip, exaggerated rumour and we would no longer fear people’s reactions or care about stigma or discrimination. We could get on with our lives. Why are we afraid of tellling them? Why do we feel there are such barriers to explaining our situation? How much of our fear is a reality? How much are we ourselves intimidated by the negative media image? If we can’t accept it ourselves, how can we expect other people to accept it?
The decision to tell people we have HIV is the same as all other difficult decisions that we have to make in life. There is a process we go through: the initial thought, our relationship to the person, weighing up the pros and cons, being fearful of the outcome, considering what we might gain or lose, then …the act of telling. It is a struggle, a long rational yet emotional process involving our heart, mind, soul and physical body. Every difficult decision in life – like coming out as gay – involves the same process.
This process involves asking ourselves some difficult questions and remember; you can never untell.
There are so many other barriers stopping me disclosing my status!
Are we to live our life in fear of everything? And how many of these are actual? How many are really due to external or cultural factors? How much is due to our fear of rejection? How much to our not having come to terms with living with the virus? How dismissive, cruel, ignorant and uneducated are our loved ones? If they are, why do we waste time on them?
In each instance, try and work out what is real and what is imagined. For instance, we are often fearful of criminalisation or prosecution. Find out the facts. In this country the law protects you and under normal circumstances it is not a legal requirement to disclose to anyone; unless you are having unprotected sex. HIV is a virus not a crime.
There are many advantages of disclosure … avoiding most of the above for one thing!
There is evidence to show that disclosing also has a positive effect on our CD4 count – it comes as a relief and lessens stress because we are no longer living a lie.
Disclosing allows us to build a support system and social network where it is not an issue. It allows us to engage with life and people, avoiding isolation. Being able to talk about our feelings and problems can often make us feel better. In short, disclosure allows for emotional and practical support – and often a big hug!
Disclosing allows us to manage and be in control of the situation while allowing others to make informed choices. Once you have disclosed to those you want to, you realise that it is nobody else’s business
When we can stop worrying so much about disclosure, we can move forward and get on with our life. It is a very small virus and it should be a very small part of our life.
It depends on who you’re telling. You may adopt a different approach depending on whether it’s a friend, family member, employer, health care worker or sexual partner.
Some of you may have told one or two people so … what worked for you? Why did it work? How can I use this strategy and knowledge to tell others?
There are one or two golden rules:
Once you have disclosed – and hopefully had a positive experience – it becomes easier each time. Practice makes perfect.
Negative reactions do happen but are rare. Are we to stop living and loving because of others’ ignorance? Of the hundreds of people that came into my office last year only two had experienced bad reactions when disclosing their status.
On a more personal note I have been living with the virus since 1984 and have only been rejected once!
And if people reject you, do you really want them in your life?
Nothing ventured nothing gained!
Contact the patient reps on 020 3317 5177