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Experiences of health care :
Getting a diagnosis
Getting health and social care
Making decisions about treatment
Taking anti-HIV drugs
Challenges of anti-HIV drugs
Looking after yourself :
Coping with mental health problems
Dealing with your thoughts
Talking about it
Becoming informed
Gaining power and strength
Spirituality and religion
Holistic health
Disclosure, discrimination and other challenges :
Secrecy and telling people
Support groups
Dealing with difficulties, finances and benefits
Work and routine
Prejudice, stigma and discrimination
Telling children and parents
Negotiating Sex :
How people became infected
Casual sexual encounters
Sex in relationships
Telling sexual partners
Looking ahead :
Living now & in the future
Illness and death
Finally, what people with HIV want you to know
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HIV
Subject index
Clip
Chronic health issues
>>
HIV
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Aged 41-45
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Interview 22
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Is reluctant to view her experiences as side effects.
Her anti-HIV drugs (Kaletra and Combivir) brought her viral load down to undetectable at the time of interview. She has strong faith that Jesus has healed her in combination with her medical care.
Chronic health issues
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HIV
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Aged 36-40
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Interview 13
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Had panic attacks and became suicidal when taking anti-HIV drugs.
He currently takes 4 antivirals (AZT, atazanavir, ritonavir, tenofovir) after suffering severe side effects from other combinations. His viral load was low and he attributes his good health to taking responsibility for his own wellbeing.
Chronic health issues
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HIV
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Aged 56-65
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Interview 25
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He finds his lipodystrophy hard to accept.
He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. With treatment, he now looks forward to a long retirement.
Chronic health issues
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HIV
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Aged 41-45
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Interview 30
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After attending an HIV conference he negotiated with his doctor to change his medication. (Read by an actor.)
He was admitted to hospital with a high temperature and headaches where he was diagnosed with HIV. He negotiated his current treatment regime with his doctor (Kaletra and efavirenz), (Video and audio clips read by an actor.)
Chronic health issues
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HIV
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Aged 31-35
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Interview 18
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She was distressed about the side effects of her medication, but the doctor focused on the improvements in her immune system. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
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HIV
>>
Aged 41-45
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Interview 10
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Had real trouble taking his medication because of the problems he encountered.
Today, he has considerable support from friends and family, and takes a combination of anti-retroviral drugs with few side effects (abacavir, 3TC, Kaletra). He is now in good health except for occasional chest infections.
Chronic health issues
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HIV
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Aged 56-65
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Interview 29
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He takes 'drug holidays' and lives with the consequences.
He currently takes Kaletra, tenofovir, 3TC and has an undetectable viral load. He has suffered from painful peripheral neuropathy and uses visualisation and meditation to control the pain.
Chronic health issues
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HIV
>>
Aged 31-35
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Interview 14
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At first he was scared of the list of possible side effects but his side effects settled down in time.
He believes dealing with multiple difficulties in his life like HIV has made him stronger. He takes Fosamprenavir, Ritonavir, Tenofovir and Emtricitabine (6 tablets once in the evening) with few side effects.
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 46
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She couldn't sleep so tried changing the time she took it, and eventually her combination was changed. (Read by an actor.)
Although her CD4 count was as low as 40 when she ill, it is now 700 and she feels better than ever. Counselling, support groups and staff at GUM clinics have been the most helpful to her. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 12
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He put up with diarrhoea and painful feet on his new combination because it worked so well.
He suffered from severe diarrhoea and peripheral neuropathy while taking an earlier combination of anti-HIV drugs, but he currently takes nelfinavir, 3TC and abacavir with few side effects. He has had to cope with HIV-related illness, depression and mania at various times in his life.
Chronic health issues
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HIV
>>
Aged 36-40
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Interview 20
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He believes that resting and avoiding certain foods helped his medication to work better. (Read by an actor.)
He started treatment soon after diagnosis (efavirenz and Combavir) and his viral load quickly became undetectable and he had few side effects. He resists blaming his life problems on HIV. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 36-40
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Interview 12
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An irregular heart beat and high cholesterol were treated as potentially serious side effects.
He suffered from severe diarrhoea and peripheral neuropathy while taking an earlier combination of anti-HIV drugs, but he currently takes nelfinavir, 3TC and abacavir with few side effects. He has had to cope with HIV-related illness, depression and mania at various times in his life.
Chronic health issues
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HIV
>>
Aged 31-35
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Interview 18
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Knowing people who are dying from HIV has changed her outlook on life. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
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HIV
>>
Aged 36-40
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Interview 28
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He has 'male menopause' and chronic fatigue which may have something to do with long-term anti-HIV drugs.
He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.
Chronic health issues
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HIV
>>
Aged 46-55
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Interview 42
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Lack of money can contribute to desperate situations.
She became sick in the UK while visiting some of her children who live here, and she feels she is now 'stuck here.' The uncertainty over her immigration status is very stressful and does get her down. (Video and audio clips read by an actor.)
Chronic health issues
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HIV
>>
Aged 46-55
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Interview 16
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If you are optimistic yet anticipate side effects and illnesses you can cope with them better.
He was taking a combination of anti-virals (zidovudine, nevirapine and abacavir) with no side effects. He has less energy than he once did, but is not sure if this is due to HIV or getting older.
Chronic health issues
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HIV
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Aged 36-40
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Interview 17
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Taking your time and developing a relationship with your doctor is important.
He took time to work out who to disclose to and to make treatment decisions (he currently takes Combivir and efavirenz). He initially suffered mental health side-effects (e.g. trouble sleeping, irratibility) but now has few problems with medication.
Chronic health issues
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HIV
>>
Aged 56-65
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Interview 25
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Explains why he will put up with side effects and stick with his current medication.
He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. With treatment, he now looks forward to a long retirement.
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 31
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With anti-HIV drugs becoming simplified it makes them easier to take. (Read by an actor.)
While he did not become very ill with HIV, his GP proposed HIV testing when he had skin rashes in 2000. An early diagnosis meant it was possible for his health to be monitored. (Video and audio clips read by an actor.)
Chronic health issues
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HIV
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Aged 46-55
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Interview 43
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Talking to other women with HIV gives her courage to approach her doctor about sensitive concerns. (Read by an actor.)
She has teenage children, and although she found it difficult to tell them about her HIV, they were very supportive. She believes that for women it is vital to seek out others with HIV to share their experiences of HIV. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 56-65
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Interview 34
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Hopes a cure for HIV could help him with his current health problems.
His wife took the news about his HIV very badly and their relationship broke up. He felt depressed and had suicidal thoughts. The care of HIV clinic staff and support groups were very important to his survival. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 18
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Had much more energy and better concentration after improving her diet and exercising. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 31-35
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Interview 18
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Attending a support group helped her to see that a painful condition was actually a relatively rare medication side effect. (Read by an actor.)
Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)
Chronic health issues
>>
HIV
>>
Aged 46-55
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Interview 09
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Did not have enough food to eat with her medication. (Read by an actor.)
Now on anti-retroviral treatment (nevirapine, tenofovir, 3TC), she has overcome her isolation mainly through support groups and her Christian church which is accepting of HIV. She still suffers from health problems. (Video and audio clips read by an actor.)
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