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Living with HIV – a personal story

Health Minister Walter Roban walks up the stairs of the City Hall at the beginning of the 2009 World AIDS Day Proclamation in front of the Minister is a gigantic quilt which was created out of remembrance for those who have passed away from AIDS in Bermuda.

‘Tanya' is one of almost 300 people in Bermuda who know they have the HIV virus. It's not a fact she shares with anyone except her partner.“My partner has the virus, that's how I got it,” she said. “But no one else knows. I have three children, two are in their 20s and one is a teenager. None of them know.”Tanya, not her real name, is in her 40s. Her parents are alive and, although she said they share a good relationship, she's not told them she has the virus either.“I'm not comfortable with people knowing I have the virus,” she said. “It does not affect my day-to-day life. I can function normally. I have always worked hard. I've always had more than one job.”She was diagnosed with the virus three years ago. Since then, her everyday life has not changed dramatically. She continues to hold down more than one job.“I live my life to the fullest,” she said.But although the virus has not impacted her physical capabilities, it's caused her some mental anguish. She said she avoids going to King Edward VII Memorial (KEMH) because she doesn't trust that her medical business is being kept confidential.“For example, if I need an X-ray, I'll go to another facility and I try to have any type of test I need done, done at my doctor's office,” she said.She believes that the breach is coming from some clerical hospital staff.“Not the medical staff, not doctors and nurses and no one in the accounts department,” she stressed.She said she feels that some clerical staff in departments where she has had tests done, have taken the information that she is HIV-positive, and shared it with their friends.“When you go in a place where they are supposed to be professional and they jeer you and they point you out, it's uncomfortable,” she said.“I saw one lady from the hospital pointing me out to the person she was with when I was in the supermarket.“I mostly have these experiences at the hospital. Bermuda's a small place. Some people cannot keep their mouths shout. They can't mind their own business.”A hospital spokeswoman said patient confidentiality is a priority and those employees who don't honour this face disciplinary action.Tanya said she has no tangible proof and therefore has made no formal complaint to hospital management.“If patients feel their confidentiality has not been protected or have any other concerns about their care, they are urged to contact the Quality and Risk Management Department, which responds to and investigates all complaints,” the spokeswoman said.Tanya explained that unless the people confessed, it would be too difficult for her to prove and would only result in upsetting her further.“I can tell, it's in their attitude, in their body language,” she said. “One time I went in for an X-ray because the medication was making me sick.“The lady working there kept looking down at my paperwork then up at me. It's like they feel that they have something on me.”A boss who was previously receptive to her hugs suddenly was noticeably uncomfortable with them. Tanya believes a hospital employee notified her employer that she was HIV-positive.“Eventually they forced me out of the job,” she said.While she's not one to sit down and feel sorry for herself, Tanya admitted that these experiences do cause her to have bouts of depression.“I don't feel isolated because I have the virus. I live my life to the fullest,” she said. “But I do feel like a victim.“It just happened (getting the virus), I didn't expect it to happen. I came forward and I was honest. The way I'm treated sometimes makes me feel like I should have not come forward. It makes me feel like not taking the medication.”When she reaches these lows she said Health Department nurse Kim Ball offers help.“Kim gives me a lot of support,” she said. “The doctor's office is also very supportive to me and give me a lot of respect.“I have to ignore the other people. I've been assured by the doctors and everybody that I cannot infect anybody except through sexual contact or doing drugs. I don't do drugs so I cannot harm anyone with this.“They try to put hate in me but I override all that and get on with my life.”

295 people in Bermuda had HIV last year

Test your knowledge of local HIV statisticsHere are the answers to the HIV statistics quiz we published at the start of HIV Awareness Month.Following the first reported AIDS case in Bermuda in 1982, 733 persons have been diagnosed with HIV in Bermuda.Of these, 555 persons have progressed to AIDS and 438 have died. This includes the 2010 statistics.Last year, 11 persons were diagnosed with HIV, six persons were diagnosed with AIDS and four people with HIV/AIDS died.As of December 31, 2010, it is estimated that there are 295 persons in Bermuda diagnosed as being infected with HIV.From January to April of this year, we have had two new HIV cases, no AIDS cases, and one death.