Living with HIV/AIDS – coping with stigma HIV/AIDS challenges in Norway By N.N

Paula Simonsen, HIV activist: Hivpositive er en veldig ressurssterk gruppe, når de først greier å fri seg fra frykten for stigmatisering. Jeg kjenner etter hvert mange som har hiv, men flere av dem lever med dette helt for seg selv. Det jeg ser blant disse er en enorm ensomhet, og mange er på leting etter en partner, oppsummerer Paula fra sine tre år som hivpositiv. Hun engasjerte seg som aktivist i 2004, like etter at hun fikk sin diagnose.

HIV- situation in Norway In 2005: Persons with new infections diagnosed in Norway: 219 persons 122 (56 %) men and 97 women. This is lower than the figures for 2004 ( a reduction in both heterosexual and homosexual infection, but a slight increas among int. drug users). Prevalence in total: HIV-positive persons in Norway men and women. –Folkehelseinstituttet MSIS-rapport nr. 7, 2006

National seminar for HIV-positive women in 2006: Stigma and self-stigma Secret location Many are not open in their own neighbourhoods, communities Some are not open with their families Women from all walks of life Women of age groups (20 -69) Many married women, many mothers (HIV-negative children) Immigrants and non-immigrants Norwegian women infected in Norway Length of living with the virus varied: years

“Between shame and acceptance” A qualitative study of HIV positive Women’s experience with and coping with HIV/AIDS Renate Kleven Master thesis in Sosiology from the University of Oslo, 2006

Norwegian, Asian and African interviewees ( 30 – 50 years ) living in Norway All of them almost “invisible” Feared stigma or experienced stigma Mixed experience with medical treatment, want life prolongation, but have varying levels of negative side effects Felt the burden of living with the unpredictability of the unknown disease development Impact on both physical and psychological health

From Renate Kleven’s thesis, continued: Several women living with negative partners, feared infecting them Single women feared being rejected Most chose silence and withdrawal Those who opened up were accepted by family and friends Some divorces when diagnosis were shared

From Renate Kleven’s thesis, continued: To be open, “half open”, or not to be open: Many factors influence the choice: –Age of children –Family and extended family situation –Fear of gossip, stigma and exclusion (some African immigrants from some African countries, - reflected levels of openenness in countries of origin) –Fear of how families would be treated –Choice of selected significant others to be informed

From Renate Kleven’s thesis, continued: Experience of being rejected as “unclean” Feeling unclean Feelings of shame Feelings of guilt Clear evidence that HIV/AIDS is (still) a stigmatised disease

From Renate Kleven’s thesis, continued: Those who were open about their HIV- status and who experienced acceptance from family and friends, coped better than others Acceptance from intimate family and/or friends was experienced as of critical importance for coping well with the disease

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From the Manifest of HIV positive: 2. Hivpositive er usynlige i samfunnet! De fleste hivpositive er lite åpne i forhold til sin hiv- status. Der hvor dette er et valg basert på frykt, skaper det psykiske helseproblemer, isolasjon og dårlig livskvalitet. Dette fører til at inkludering av hivpositive i samfunnet blir vanskeliggjort. 3. Hivpositive blir fortsatt stigmatisert på alle plan! På grunn av manglende informasjon, usynliggjøring og fordommer blir hivpositive fortsatt stigmatisert på alle plan i samfunnet. Dette gjelder privat, på arbeid og i møte med det offentlige hjelpeapparat.

From the Manifest of HIV positive: 6. Den globale situasjon er dramatisk! Det finnes ingen løsning i sikte på hiv-epidemien i verden. Internasjonal solidaritet er en nødvendig del av hiv-arbeidet i Norge. Ved hjelp av samarbeid, arbeidsfordeling og koordinering og med en dyp respekt for hverandres egenart og erfaring ønsker vi å møte disse utfordringer i fellesskap til beste for alle hivpositive, alle utsatte personer og alle som er berørt av hiv.