CYC - Disclosure

THE PATIENTS FORUM ON 'DISCLOSURE'

On Wednesday 15 June 2011, the Patient's Forum held a meeting at the clinic and the topic for discussion and talks was all about 'Disclosure.' Around 25-30 patients of the clinic all gathered to have an informative and enjoyable evening, listening and sharing stories and experiences from one another and in particular, the sometimes difficult issue of 'disclosure.'

First and most foremost, the food!

It all started around 7.0pm when Nurse Claire showed everyone to the men's waiting area where there was an array of sandwiches, Doritos with dips and drinks, as well as fresh fruit salad and thick fresh cream, this time supplied by Sainsbury's.

Meeting gets under way with introductions to the speakers

Then, everyone moved in to the conference room and Bernard introduced the fellow speakers. One of them started the proceedings by quoting a speech from Martin Luther King and then went on to tell of his pleasant experiences when it came to him and his wife, divulging their status to their family, not just those in the UK but all around the world. The married couple are wonderful and their passion to speak out and inform as well as educate others about all aspects of living with HIV is clear, concise and compelling. Their devotion extends to a peer support group of their own, Milestones.

KNOWLEDGE One of the fermale speakers told us about when she was diagnosed. She expressed that her time was spent discovering and learning all about her condition. She gained the knowledge and then the confidence to be able to disclose her HIV status to her family and friends. It was interesting how she would tell others that her health condition was diabetes.

PASSION A Nigerian man spoke of his wife being diagnosed HIV+ which lead to him getting tested and with a positive result. He spent a difficult time and was confused as his health was in good condition. He mentioned that there was a need to tell his children, particularly as they were of an age that they maybe experimenting with sexual partners. He said that it was disclosing his HIV status to his loved ones, that gave him the passion to reach out to others, to teach and educate them with his knowledge and experiences of living with HIV.

REJECTION The discussion opened out and one patient in the audience explained how his disclosure to his parents, over 20 years ago, was very unpleasant. It met with violence and he was thrown out of the family home.

GAY Another caucasion gentleman said that he felt he could disclose his status to friends and family but that he had a more difficult time telling his G.P. Not because of his HIV status but more because of the fact that he was gay.

UNDERSTANDING One gentleman expressed that it was important to have a very good idea of the reaction from the person who you are disclosing your status to; to be aware that you might not get it right when it comes to thinking how someone will react. Some are completely supportive with every understanding of the condition, some may be appalled and appear rejecting at first. A lot of reactions are usually around wanting to know more and how HIV affects their friend or family member. It can be a combination of these reactions too and over a period of time.

FEAR A black gentleman who attends church regularly told us of his fear to disclose his HIV status to his friends in the church. He was worried about their reactions. He also spoke of his difficulty with his medication but that how supportive his wife was, who was sat beside him at the meeting. She contributed to the forum by stating that there is still much to learn and that there is stigma and hostility amongst the black community in general. She has four adult children and revealed that it was a struggle at times, to keep their Father's HIV status from them. She felt that it was not her position to disclose her husband's status to anyone, including her children and that if and when the time was right, he would tell them. She added that when she went for her HIV test, although it was negative, she discovered that she did have sugar diabetes.

LEARNING The forum established that parts of Western Africa still seemed to have much to learn about HIV and that most of South Africa, through education and communication, have come a long way in understanding and tolerating all that surrounds HIV.

COURAGE One black lady told her story of how she discovered her sister's HIV status by seeing it written on her death certificate. This made her go for a test herself and she was HIV+. By finding the courage to discuss the matter with her family, she learned of other family members who are also diagnosed with HIV.

STRENGTH Another lady, who was single, stated that by talking to friends and some family members about her HIV status, that she had found the strength needed to cope with rejection when meeting prospective partners.

CONFUSION And another lady reminded us all that it is OK not to disclose your status if you are not ready or comfortable to. This lead to an interesting issue around criminalisation with HIV and disclosure. There is much confusion still about whether there is a legal obligation to divulge your HIV status to a sexual partner, particularly if safe sex precautions are in place.

LIFE EXPECTANCY A question was posed to Dr. Mark around the life expectancy of someone living with HIV. He replied that a person who maybe diagnosed as having HIV in their 20's, can expect to live a normal life expectancy.

INSPIRATION Finally, one of the more senior patients amongst us, said that she was diagnosed HIV+ in 1981, an amazing and inspirational 30 years ago.

"I had a thoroughly good time at the clinic's forum and found the entire experience humbling, entertaining and informative. It gives me great peace of mind listening and learning from others, how they are coping and living their lives. It is a pleasant reminder that you are never alone. I felt the positive and upbeat atmosphere in the room and how the 'feel good factor' spread over that gave confidence to some of the more shy amongst us, to speak out and tell their story."

Wayne

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