What was to become HiVitality as we now know it began with groups joining weekly evening sessions at Birmingham ‘Body Positive’, working with images, led by a voluntary worker with experience and commitment in this field.
What happened was that they found it really helpful and useful to explore and express their feelings this way, and members of this group discovered that having been given a diagnosis of HIV five years or more without becoming ill (ie developing AIDS), this was a wonderful opportunity to meet others in the same situation, and share their feelings.
They were people who had no other support, no emotional support, for issues specific to this situation, for example 'survival guilt' - Why am I alive when all my friends are dead?’, ‘When will I die?’, what to do after the proscribed ‘6 month death sentence’ they had received from their doctors on diagnosis, having maybe quit their jobs, cashed in their pensions perhaps left their homes, and so on; in other words ‘How will I live?’.
An experimental one-day workshop was given, with tremendous take-up and enthusiastic feedback.
Tom Matthews (a later co-founder) had been present at all these events, and suggested to the leader of the sessions [me] that we could do the same thing over a whole weekend, inviting, from all over the UK, people who had received a positive diagnosis of HIV 5 years or more ago, and had not become ill.
Funding was found, and the first retreat was at Glenfall House in Cheltenham.
At the end of that truly successful weekend, during the closing session, Tom said he thought that it would be a great relief to participants if they knew that this would happen again. There was unanimous agreement.
Tom was in a position to ensure funding for the next retreat, from West Midlands Health Authority, and following this, the leader gave presentations to all the Regional Health Authorities who committed funds for continuation of the retreats.
In the 80s and early 90s there was much labelling of people with HIV/AIDS as ‘victims’, and we wanted to give a name for these new services being provided for this newly identified and self-identifying group who had needs but no services or support: instead of ‘victims’, they were ’survivors’, so the name ‘Long Term Survivors’ was chosen, and further identified as the ‘Long Term Survivors Group’.
Largely for funding issues it was decided to develop it as a charity, with an official mission statement and all the relevant procedures, with four trustees.
At this point, as the number of members was increasing and attending from all over the UK, its charitable status carried its name as the “National Long Term Survivors Group’, and amongst us we called it the LTS.
Over the years, the face of HIV has changed dramatically, and it became appropriate to consider whether the original name was an accurate reflection of this. The focus of those who were ’surviving long term’ became about ‘living well with HIV’ - and this definitive self-image of the charity led to its new name - ‘HIVitality’, which is not just about living well, but being well, staying well, and knowing the vitality of living with this vital change of perspective!
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