Chair: Michael Edwards, THT
Facilitators: Beulah Gordon, PW, Kay’e Balogun, THT Yorkshire, Sue Gardiner, Positive Tongue, Mathew Keogh and Suresh Vaghela, Body Positive North West
Rapporteurs: Emma Bickerstaff, NAT, Amanda Elliot, UKC and Peter Noble, NLTSG
This workshop was attended by 70 people and was for anyone who wanted to explore issues around telling people their HIV status (disclosure). Due to the popularity of this issue the organisers had arranged for three rooms to be available to enable people to split into groups to discuss their concerns. The facilitators, who had experience and knowledge in different areas, rotated between the rooms. At the start of the workshop those participants who had disclosed were asked to volunteer the following:
Responses included:
Close friends/family - for support and understanding
Medical professionals - especially if on treatment to prevent drug interactions
My mum - I love her
Immediate family - to protect them from malicious talk/vicious rumours
Pastor - for prayer/faith
Family - need to know what I’m going through so they can educate others
Spiritual leaders - to educate and prevent preconceived erroneous messages
Son - education and to enable understanding and so that he receives support
Friends - education, so they can protect themselves
Social Services/Benefits Agency - so I can maximise benefits/support
Sexual partners - they have a right to know
Extended Family - for support
Family - I’m making a will
Local Authority - for housing benefit
People closest to you - so they understand certain symptoms
Anyone I have a real relationship with - I want to be real not fake or with people who would reject me
University lecturer - to explain absence
Family - I know I can get support
More or less anyone –to educate, relieve stress and prevent gossip
Local MP - for support around immigration issues
Everybody - so I can live a normal life and be me
Sexual partners – for honesty about transmission and risks involved
Bad words about ‘disclosure’ |
Good words about ‘disclosure’ |
Vulnerable |
Truthfulness |
Shameful |
Openness |
Risk |
Honesty |
Rejection |
Relief |
Discrimination |
|
Loss |
Putting your trust in someone
Having the strength to feel vulnerable
Putting your life on the line
Being ready to face the consequences
Putting a burden on others
Dealing with the possibility that information will become public
Being responsible so that partners can make an informed choice/decision
Opening up
Changing people’s perception of me
Enlightening
Sharing otherwise private information
Stepping into the unknown
Informing and educating people
Raising an alarm
Revealing a shameful secret
Pride and self-worth
“When I get to the point where I can feel I can disclose I feel like I am standing up for myself”.
Most agreed there was a need to tell close family to get support and understanding, although this could be very emotional. Timing was crucial too. Sometimes it helped to tell one close family member, like a sister, before telling others. Some suggested ‘sounding’ people out first (disclosing with care) perhaps by scene setting. This could be done by mentioning HIV and AIDS or the Walk for Life in a general conversation in order to gauge someone’s reaction and to see if they would be non-judgemental.
One participant said it was important to disclose to people you loved because you did not want to harm them. Another man said there was sometimes a case for not telling people you love to protect them from harm. This man said he hadn’t told his mother because he loved her and it would have ‘worried her silly’. She went to her grave not knowing. He said he had decided not to tell her unless it was absolutely necessary.
Another delegate said she would tell her Pastor for spiritual support but not her mother as she had already lost so many children. This person had told one of her sisters and a close friend. Others said it was important to tell sexual partners for reasons of honesty and onward transmission; letting people know the risks involved.
It was felt important to tell children when they ‘reached an age of understanding’ but it was hard to judge what this age was. One of the facilitators said in her experience this was one of the hardest areas of disclosure. Most said they wanted empathy from people, not sympathy. Everyone present did not want to be regarded as victims. Some commented that telling people could be rewarding and life changing.
Some felt it was okay to tell their doctor but others said they would rather not tell their GP. One woman said she regretted telling her GP as he continually reminded her of her HIV status and repeatedly asked whether her child had been tested. One facilitator said that unless it was something as trivial as a headache, he never visited his GP.
One of the facilitators opened this part of the workshop by describing how he was diagnosed during the first week of a new relationship. He and his new partner both had fears so they went to THT to discuss the risks and safer sex. This helped them both, but especially his partner, who found it good to hear the facts from someone in the field. THT saw them together as a couple and then gave them both the option of going back separately. He said that when he was diagnosed he had felt that nobody would want to be in a relationship with him. But he is still in the same relationship now.
There was much discussion around whether the risk was worth taking. Some felt it was as it restored self-confidence. But others said you had to have confidence in how others reacted. One woman explained how her sister had been physically sick when she told her. Other people living with HIV said that their partner had broken down and they had to provide support to them as a result.
Others said it was not always a case of when but if you should disclose. One woman said she feared rejection and risk of rejection was high. One man said that other people could always ask. If they were being safe and they didn’t ask, then he did not feel obliged to tell. Why should the onus be on the person if practising safer sex? Relationships are a two-way thing. One person mentioned starting with the premise that everyone is HIV positive, however even if they were, then the risks of re-infection or getting other sexually transmitted diseases should be considered.
One women countered this by saying she felt strongly that people had the right to an informed choice. Another took the opposite view and said she would never be able to tell. However there was also the consideration that people may come to know eventually anyway (because of sickness, taking medication etc). One person said telling people is about taking responsibility for ourselves but others said it depends on the kind of relationship. One person said that people have their own individual way. Someone said telling people is about self-acceptance and reducing stigma.
10 tips for telling a prospective partner
1. Accept your own diagnosis first (your attitude to HIV will affect his or hers)
2. Make an assessment of the risks and reasons to disclose
3. Discover what he or she already knows about HIV beforehand
4. Think about it sooner rather than later
5. Choose the time and place carefully
6. Be honest
7. Be calm, receptive and ready to answer questions
8. Value yourself, feel confident and be prepared to face rejection if you have to
9. Be ready to support the other person and have information ready if needed
10. Have somebody ready to help you to CELEBRATE your achievement of telling, whatever the outcome
There was a general discussion about work-related disclosure. There was a lot of concern about cases where people had been fired once their HIV status was discovered. One person pointed out that employers would not sack someone with MS but probably would if they had HIV. One participant said she was currently trying to fill out her registration pack to become a social worker and was totally unsure how to answer the health and serious illness questions. People are unsure about whether they are legally obliged to declare their HIV status and who needs to know.
Many participants sought further clarification on the law. The two facilitators explained that HIV now had to be treated as any other disability. They said the policies were now in place but there needed to be challenges to workplace discrimination to test the law. The good news is that people living with HIV are now protected by the Disability Discrimination Act, which means you cannot be discriminated against due to your HIV status. The facilitator went on to explain that the legislation was supposed to be ‘enabling’, meaning it should ‘enable’ people with HIV to work (and disclose) without fear of discrimination.
One participant said he was frustrated because he wanted to get back into the job market, but organisations like Positive Futures who offered a valuable service were not available to many people outside London. He said he had got a lot of useful information from Age Concern, which is up to speed on issues around living with HIV and being gay. There doesn’t seem to be a dedicated advocacy agency to challenge discrimination. Some people who had disclosed at work said it had made them feel uncomfortable and vulnerable. Others said they were treated differently after disclosing. Some people who were self-employed wondered whether they should disclose to their staff.
The good things about telling people |
The bad things about telling people |
Getting empathy |
Getting fake sympathy |
Reducing stigma and discrimination |
It could increase stigma |
Feeling empowering |
Depression |
Increasing acceptance |
Loss of respect |
Relief |
Anger |
Weed out undesirable potential partners |
Rejection |
Educating people |
Reinforces stereotypes |
Getting support |
You end up supporting people you tell |
To work out who your friends are |
The person you tell might tell others |
Strengthened relationships/friendships |
You can’t un-tell someone |
Getting a new partner |
Marriage or relationship breakdown. |
Creating awareness |
Harassment |
Positive risk-taking |
Loss of self confidence and esteem |
Conferences like Changing Tomorrow |
Isolation |
Overcoming and banishing fear |
Emotional abuse |
Access to treatments |
|
Support from close relations |
|
Getting the right treatment |
|
Access to services |
Close friends
Professionals
Counsellors
Support groups
Other positive people
Partner
Resources (books, leaflets and magazines)
Priest
HIV organisations
Helplines
Children’s services
Citizen’s Advice Bureau (CAB)
Medical professionals and consultants
GUM staff (help to tell current and former partners)
Websites
Work
People living with HIV were unclear about their rights and responsibilities
The Disability Discrimination Act offers protection to people living with HIV
There are currently no work related HIV projects outside of London
Partners
Telling prospective partners means risking rejection
Some people living with HIV feel there is no need to tell if practicing safer sex
Telling prospective partners can help with self-acceptance and confidence
Friends and family
People want to tell close family to get support and understanding
It’s difficult to judge when children reach the age of understanding
People living with HIV want empathy from people, not sympathy
When talking to children it’s important to be supportive and open about routes of transmission and to answer difficult questions about dying and the future
Work
Organisations producing resources about employment rights should disseminate these more widely
There should be more work related projects and information outside of London
There should be more work-related information, communication, employment opportunities and interactivity on websites
Partners
There should be more resources and information for partners and/or prospective partners, for example ‘My girlfriend has HIV’
There should be more workshops and other opportunities for people living with HIV to discuss disclosure to partners
Friends and family
There should be more resources and information for family, friends and children, an updated version of ‘My parents have AIDS’ for example
There should be more workshops and other opportunities for people living with HIV to discuss disclosure to friends and family, especially to children
This workshop was evaluated by 59 people between the ages of 22 and 64. The average age was 40.
Gender
29 female, 29 male, 1 not stated
Ethnicity
25 white, 25 black African, 5 not stated, 4 other non-white
Sexuality
33 heterosexual, 21 gay, 2 bisexual, 2 not stated
Employment status
35 not employed, 11 part-time, 9 full-time, 4 self-employed
Usefulness
Very useful |
Useful |
Not useful |
44%(26) |
44% (26) |
12% (7) |
27 people set action points
Preparing for disclosure (30%)
Look afresh at how I disclose HIV status
Discuss it further with other HIV people
Be more assertive
Will prepare self better before telling
Get networks for support I need
Learn the intricacies of legislation
Being selective (30%)
Draw up pros/cons when, where and who!
I will choose certain people to tell
To express myself but carefully to who and how
Educate and inform others (22%)
Write articles for newsletter on issues, especially work
Encourage others to examine consequences
Gently inform people of need to know more
Being more open (18%)
Go public
Tell more people
Be more open
Move on to What In The World Are We Doing?