In the Loop is a free support group for careers, partners, friends, and family of people living with HIV (PLHIV).
The needs of carers or partners of people living with HIV (PLHIV) have frequently taken a back seat when planning support programs within the HIV community. In the Loop is a group which seeks to redress this balance.
In May 2013, Living Positive Victoria (LPV) and Positive Health, Counselling Services at the VAC/GMHC, collaborated to run a pilot group at Coventry House in Southbank. In the past there have been specific support groups run for the HIV negative partners of HIV positive men. In the Loop was designed to cater for this group as well as for anyone who is close to someone living with HIV.
It is recognised that there are occasions when people who are involved in caring for someone with a chronic condition feel helpless in the face of illness and are unable to adequately attend to their own needs. They might postpone their own medical appointment or cancel a social engagement on account of the person they are looking after. They might feel unable to put their hand up for some extra help or not even consider the possibility of a break from their role. It might be impossible for them to enquire about their loved one’s health for fear of upsetting him or her. Left in the dark they imagine the worst.
But there is another subtle and sometimes destructive issue for many carers of PLHIV. The issue of secrecy is paramount for many people and this adds a complex layer to the caring role. Sometimes the PLHIV has requested absolute secrecy around their diagnosis. On other occasions the partner or carer may have imposed their own silence around HIV for fear of discrimination and rejection by people in their immediate circle. The effect of this secrecy and stigma may isolate the PLHIV as well as those involved in their support.
In the bad old days the type of care that was required was very different from what most PLHIV need today. However, even today, having someone in your life that is living with HIV can produce a burden which at times is difficult to shoulder. We like to think that the stigma associated with HIV has diminished in many sectors of society but how it is experienced by many is still present. This was perfectly illustrated in the group when it became apparent that the majority of participants had not told anyone what they were doing on the two consecutive Saturdays In the Loop was held.
The structure of the two days is purposefully flexible. The aim is to provide information on HIV and the services available in the community and then focus on self-care and ways the participants might support themselves in their role.
One participant wrote the following after attending the workshop: “The program you put together was outstanding and in the past week or so I have called upon the information you provided at least twenty times a day. I have read a myriad of books on HIV but the experience of talking to people outweighs them all. Your calm and reassuring approach to all of us was a comfort beyond words.”