Group Meetings

[last updated 17 Sept 2009]

(Next UK meeting: ______)

Introduction

In 1995 the UK group started running twice yearly group meetings (late March and late September). From 2004 this was reduced to one per year. Some people travel from continental Europe and from the USA in order to attend.

The following UK group meetings have taken place to date:

No.	Place	Date	Attendees
1	Mansfield, Notts	25 Mar 1995	16
2	Mansfield, Notts	2 Sept 1995	14
3	Banbury, Oxon	3 Mar 1996	39
4	Huntingdon, Cambs	21Sept 1996	60
5	Richmond, Surrey	22 Mar 1997	78
6	Oldham, Lancs	27 Sept 1997	49
7	Oxford	21 Mar 1998	62
8	Leeds	26 Sept 1998	62
9	Oxford	27 Mar 1999	53
10	Derby	9 Oct 1999	38
11	Oxford	25 Mar 2000	51
12	Oxford	9 Sept 2000	44
13	Oxford	24 Mar 2001	63
14	Leeds	24 Sept 2001	36
15	Oxford	23 Mar 2002	62
16	Oxford	21 Sept 2002	45
17	Oxford	12 April 2003	39
18	Lille, N. France	7-9 Nov 2003	??
19	Oxford	20 Mar 2004	60
20	Oxford	19 Mar 2005	48
21	Oxford	8 April 2006	38
22	London	30 June 2007	45
23	London	06 Sept 2008	29
24	Richmond, Surrey	05 Sept 2009	45

The first North American meeting was held in September 1996 and annual meetings now take place in the US every Summer/Fall. The Canadian group started holding meetings soon after. Some of the other overseas groups (e.g. Holland, Germany, Spain) also hold meetings. The Spanish group (GrApSIA - Grupo de Apoyo del Síndrome de Insensibilidad a los Andrógenos) in particular does a very professional job, considering they are a small group, with a proper meeting brochure (see Spain 2002 for example).

Note: We do not advertise full details of UK group meetings in advance on the web site (all current members receive personal invitations). Basic details of N. American meetings (dates, city, who to contact for details etc.) are sometimes posted on our Announcements page in advance.

Who Can Attend

The UK meetings are for families and individuals affected by AIS and similar conditions. Guest medical/psychology specialists also attend part of each meeting to present information and answer questions, and there is also time set aside for private discussion between individuals/families. Other clinicians can attend the formal presentation part of the meeting as observers by arrangement. Parent/'patient' attendees must be members of the UK support group.

Meetings are attended by members with AIS, XY Gonadal Dysgenesis (Swyer’s Syndrome), 5-alpha-reductase Deficiency, Leydig Cell Hyperplasia, Rokitansky (MRKH) Syndrome, Mullerian Dysgenesis etc. Those without a clinical diagnosis are encouraged to get one before their second meeting. Our guest clinicians are at meetings to answer questions from people with a known diagnosis and not to help people diagnose themselves.

Everyone feels extremely nervous and anxious at their first meeting, but will find that they quickly make friends. People often remember their first meeting as an event that had a profound effect on their lives; and the remarkable thing is the amazing sense of freedom in suddenly realising that there is no need to be secretive any more because everyone in the room is affected in some way or other by AIS or a similar condition!

Meetings Format

UK meetings take place over a weekend. Until 2007 we arranged a two-night hotel stay, with the meeting being held in a hospital meeting room or, more recently in the hotel itself. THe meetings have the following format:

People coming a long distance usually arrive on the Friday afternoon/evening and meet up with some of the others staying at our recommended hotel.

On the Saturday morning we meet at the venue and our panel of invited guest clinicians talk briefly about their clinical/research work, after which there is a Q & A session. The clinicians leave at/after lunchtime and the afternoon is devoted to a general discussion amongst the affected adults/youngsters and parents. In the evening, people assemble for drinks at our recommended hotel, after which we eat together (sometimes in the hotel, sometimes in a local restaurant). There may be some spontaneous late-night hilarity in one of the hotel rooms (amongst the women at least, we don't know what the parents get up to). Over the course of the weekend there might be some tears, but there will also be quite a lot of laughter. This is a natural outlet for the emotional tension that builds up during the meeting.

On the Sunday we reassemble at the meeting venue and break two groups, 1) affected women, and 2) parents, for further informal discussion. There is space for other groups as required. At some meetings we have a psychosexual counsellor/psychologist to guide the adult women's discussion. The weekend usually ends late afternoon as people depart to catch trains, planes etc.

Since 2007 we have abandoned the pre-arranged hotel deal and made it a Saturday meeting, with an evening meal together in a local restaurant, and then the option of reassembling for an informal get-together on the Sunday for coffee/lunch/stroll/chat in leafy/relaxing surroundings like a park. Those wishing to stay overnight on the Friday and Saturday nights will book their own hotels, but guidance and suggestions are provided by the support group when the meeting is announced.

The Benefits

To put patients in touch with other AIS girls/women is probably the single most therapeutic remedy that doctors could prescribe; and yet this is the one step that they have historically been most reluctant to take. We cannot stress this too strongly.

A CAIS 39 year-old in the US wrote:

Meeting other women with AIS, finding them to be normal makes it easier to view yourself this way, I think this is what caused me to make great strides in coming to terms with AIS. When I started going to meetings in the UK, I would literally look around the room and think to myself “This is a group of great women about whom I don’t feel the least discomfort that they have XY chromosomes or once had testes.” By being able to find this so utterly acceptable in them, I came to be much more accepting of myself. It’s like the other group members are a mirror of ourselves and when we like what we see in the mirror it becomes easier to appreciate ourselves and to understand how others could find AIS acceptable in us.

A CAIS 30 year-old wrote:

Meeting another AIS woman [a CAIS 28 year-old] for the first time was the first time in my life I have ever felt a true ‘kinship’ with another woman. I might warn you not to mention this idea to any of your regular friends, as my best friend didn’t quite understand and it really hurt her feelings. But then, I don’t think she could ever truly understand, which is precisely my point. To meet a person and immediately understand exactly what they have been going through their whole life is such a unique experience.

A PAIS 44 year-old wrote:

Prior to meeting AIS women, I had this impression that there were aspects of my physical looks, or a vibe I might put out that would make people think I was not a woman. Baggage. I'm overly sensitive to it, and it remains an issue.... And I remember regularly probing my face in the mirror from age 14 to 20-something, to see what was different. Was there something in my face that gave me away, that was subtle to me, but more obvious to those who looked at me – especially women, since they'd be the first to know, I thought. Today I don't think so. It has been a big change since the day I first asked ____ [CAIS 39 year-old], at the NYC group meeting in Sept 96, “Can you tell by looking at me?” I had wanted to ask someone that question for three decades. I've been in solitary confinement for all that time. Yep, I got parolled last year. My only visitor was my mother. Kidding aside, in some ways I view my current life as ‘restarting’ [last year] in Sept 96. I was 14 when I was given ‘the story’ by the doctor. Maybe there is a part of me that is only 15 years old inside today.

A CAIS 54-year-old wrote:

I remember _____ [CAIS 28 year-old] once said to me that she feels like she’s spent her entire life treading water in an angry sea with her feet tangled up in kelp. I had used that exact same analogy in trying to explain to my therapist how I felt about my life, and how I often wished the undertow would just go ahead and pull me to the depths. What a comfort it would have been to me all those years if I could have just once looked along the horizon and seen one of you struggling along with me. It might have given me the strength to try and pull myself free of that which entangles me and start swimming towards the shore.

A support group member, reporting on an AIS clinic 'open day' at the Middlesex Hospital, London (17th March 2000), wrote:

A nurse from Prof. ______’s paediatric endocrinology clinic asked how could she get round the problem of parents who want nothing to do with the support group because they "....want their children to mix with ‘normal’ people rather than be labelled as ‘oddities’ by mixing with support group members".

This is a difficult problem that we encounter quite a lot. Parents need to get away from their fixation on a ‘mirage of normality’. Although their children have a good chance of leading normal lives, their very real deficiencies have to be acknowledged rather than denied. If this does not happen, their children are highly likely to experience psychological problems because they will know that all is not right with their bodies. And for parents and doctors to keep telling them they are normal will only make them more suspcious that there is something being hidden from them.

Children will at some stage need to grow up into sexually functioning adults, whether their parents like this idea or not, and the groundwork for this is set in their childhood/teens. This development will not take place properly if the child is sentenced to solitary confinement, forever wondering if they are the only person on the planet with some strange condition that none of the adults around them will talk about.

The best way for parents and youngsters to get over their hang-ups and anxieties is to mix with others with a similar experience and discuss things.

See also Telling the Illness Story for an article on the healing power of telling one's story.

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