# Support Groups



## Dudders (Jun 18, 2012)

Hello Everyone,

I'm here to pick a few brains about what you are looking for in a support network - I suppose mostly focussing around using a support group.

Some time ago I was thinking about trying to set up a new support group as despite being fairly central there was little available nearby. I did find one support group locally but it took 3 months from first contact to arranging a meeting - so not exactly a regular affair! The meeting was arranged by a company that is in the fertility industry.

It was great to meet ladies going through the same thing and talk about our stories. I think we all have so much information and knowledge to share that in time we could all benefit eachother a great deal. My only gripe was that it was a bit too structured and not much chance was given to chat amongst ourselves and there was a little too much bias to promoting the company.

Now don't get me wrong, I would probably do the same in their shoes, but there were certainly some vulnerable people there that really seemed to need friendship and not a sales pitch. So it set me to thinking again about how I might go about setting up a support group and what people want from it.

In an ideal world I would like to reach a stage to be able to rope in people from the fertility industry such as inviting a representative along from a clinic and allowing the opportunity for a little sales pitch, but in return for a Q&A session. This would I guess need a group of a fairly decent size to encourage participation of such people, but I think guest speakers could add quite a lot of value for many people.

The social aspect is the most important starting point I think though and it makes me wonder a few things ... such as:

Would you be interested in attending a support group or do you prefer online support and that of family and friends?

What setting would you like to meet in - ie church hall, or a pub?

Would you like a large or small group?

How far would you travel?

How long would you envisage a meeting being? Would you give up a weekend afternoon or evening when time is likely to be less pressured.

Would you prefer a structured meeting ie a themed discussion such as "telling your employers" or "holistic approaches to treatment" etc etc. Or would you prefer a more informal set up with perhaps an introductory talk and then breaking into smaller groups and simply chatting with other people to get to know people in the same boat?

Would the inclusion of certain groups put you off attending ie those suffering secondary infertility (this really isn't to offend anyone, just trying to be realistic and if there were enough people I would gear different meetings towards different groups)? Would men being in attendance put you off (sorry to the men here, nothing personal!)?

Where would you look for such support groups? Obviously online is the main one but the ones I seem to find don't run very often etc or are absolutely miles away and I'd love to get some other ideas. I was thinking about approaching clinics and local GP practices to put up posters - does anyone have any other ideas?

Is it important to you that the person organising the group has personally experienced infertility and would you be put off attending if you learnt they were pregnant or had finally had a child or would this encourage you?

Please feel free to add anything else you think may be of interest. I'm really not sure how practical this is but would love to make a difference and meet real life people that understand this dimension of my life and hopefully make some friends along the way. All without attending a group where it feels like the organiser is trying to convert me to their way of thinking or sell me something!!

I'd like to do this successfully so I think it's important to get input from people that this would actually be relevant to! All comments good and bad very gratefully received - feel free to PM if you prefer.

Thankyou everyone


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## Dudders (Jun 18, 2012)

Sorry for the huge waffle - you don't have to answer everything lol!

Oooh but one quite important one is how often should meetings be held?

Just any thoughts appreciated xx


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## goldbunny (Mar 26, 2012)

given that i'm currently pregnant (still I hope) I hope you don't mind me posting, but having struggled for many years trying and failing to get pregnant and then having one miscarriage, finding support is something I have thought about

I do love online support for the anonymity it offers, and the fact it adapts quickly to changes in circumstances. So in some ways that would always be my first port of call.

However, I do find being childless really socially isolating, it seems impossible to find people to socialise with who won't make a big deal out of it, or who aren't just 'still partying and not there yet' or 'already got grandchildren'... I think in the event this pregnancy doesn't make it I would probably be looking for more than online support. 

I know there are some groups out there for example I think there is some miscarriage support, but it can be difficult to know how to approach getting it. 

from the point of view of setting up a support group I think the most important factor is accessibility. Everything else you can tailor as you go.. but people being able to make contact in a way that suits them is the big deal. So, for example, some people might want to make email contact and exchange a few emails before meeting someone for real rather than turning up to a meeting cold. For myself, if I were to go to a group situation I would love a staggered approach, ie, one week I would meet one person, the next maybe two or three more, then when ready move to a larger group situation. Some people might find it enough to just deal with meeting one person - often people have struggled in silence for a long time and even opening up about this stuff at all in a face to face situation can be hard or overwhelming. I think going straight into a large group situation would not suit everyone. 
So essentially if you could arrange a group whereby people could join in whatever way suited them - rather than a standard 'turn up on the fourth Thursday of the month' - would mean people could feel comfortable about approaching. 

I think the question of who to include and exclude is a huge hot potato and I have no idea how you handle it. It's something that puts me off meeting some of the lovely people I have chatted with online here. It's not so bad if you are in a fixed situation but when circumstances can change rapidly, it can make some things difficult. What do you do when someone suddenly finds themselves pregnant or becomes a step parent or something.. 

I think men/women being included wouldn't put me off, but I think maybe the age thing would - i'm not sure I would connect with for example a 22 year old male who was struggling with IF, maybe an older one I would feel more able to connect with... I don't know quite how to word that but I think there's so many factors in individual stories that sometimes you get a good match and sometimes you don't.. in a large enough group you wouldn't find it a problem but possibly in a small group you would struggle to get everyone on the same page.... despite IF/TTC as a commonality, there's still the possibility of people being worlds apart in their realities. 

I think if you were to arrange meetings for such a sensitive issue that they would be better held somewhere quiet where people wouldn't run into their mates/colleagues.. I think the people most in need of meetings are those least able to discuss it elsewhere so people's homes or a quiet hall would be better than a pub.. Having said that, I don't know if men would feel differently You need people to be able to relax but also a degree of privacy. 

I like the idea of posters in GPs.. not sure where else although my naughty head wants to plaster them over the front of mothercare since it's usually walking past there that hurts the most... 

Themed meetings or speakers has to depend on the size of your group in question. It could be that with smaller groups just having individual members tell their stories would be just as effective. Something like 'telling your employer' might not work with a group of only a few people. What works on this site is thread topics.. you would maybe be able to have an online side to your group and have people sort of vote their own meeting topics by opening threads... taking your cues from those. For example I love the threads on here about IVF clangers and the insensitive things people say, something like that could be a good meeting subject with people able to share and then maybe talk about how to make it easier for people to say the right thing. 

something else which has bothered me since I started IVF is that really the time I needed the support and information was years before I went looking for it. I just didn't know it was out there. genuinely I felt like I was almost the only person on the planet who couldn't produce children... Now I know these days the internet speeds that up for many people and so it is probably less likely that people are so badly informed, but, it still sort of niggles me that really I wish someone would go into sixth forms or universities and talk to them... get the information about fertility issues to women years before they get to where I am now.. so those who are struggling with endo or pcos or whatever and aren't ready to start a family but are maybe worried about 'when'... those who are just unaware the choices they make can affect their fertility... can get better information when they need it most. And not in the 'official line' way which seems an odd message... where basically everything seems to revolve around contraception and then suddenly when people turn 35 their entire femininity is supposedly shrunk like a prune and they are treated like aliens for 'having left it so late'... 

if you really want to make a difference you might think about how to get the messages out to the younger people...I don't know how that would be done...but it's about making them understand all the treatments that are out there and the causes of IF and when to know to ask for help...


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## Dudders (Jun 18, 2012)

Some great food for thought there - thanks gb.

And of course I don't mind you posting!  As you say including or excluding people is really a difficult one - I don't want to exclude people by any means, more just thinking how to reach the most people.  Perhaps there could be off shoot groups if numbers allow - as it certainly works both ways in that those dealing with secondary infertility may feel uncomfortable in predominantly primary infertility groups.  I know I've certainly seen posts on here where there is a whole different set of feelings with secondary such as being made to feel as if they should be satisfied with one and they need support too.

Also pregnancy after infertility is an issue - I wouldn't want people to feel unwelcome and as we both sadly know things can change very quickly, so maybe an off shoot group if numbers allow.

Hmm lots to think about.  Thankyou so much for your input and taking the time to respond gb x


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## goldbunny (Mar 26, 2012)

anytime dudders

I feel saddened really that it is a part of the way society is that it isn't easier just to talk about these things. maybe one day we won't need to have discussions like this because people will just be able to talk properly and sensitively about stuff like this. Years ago people couldn't talk about being gay and now it's something widely accepted, it would be nice if struggling with TTC could be better recognised by the media and shops and stuff... we used to get self catering places on holiday that ALWAYS came with a cot in the cupboard, it always made me cry... would have been nice if there'd been a box to tick to include/exclude it, rather than an assumption that that constant reminder wouldn't hurt anyone.. just wish it wasn't so 'almost taboo' to talk about it...


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## Mummy DIY Diva (Feb 18, 2012)

Hi 

I am on the adoption not the infertility train now so I hope you don't mind me posting but I think that support is so vital for people that I feel the need to share my story and tuppence (hope that is okay and I am not meaning to offend anyone I just think I am a minority and people are quick to dismiss people in my position.) 

I started TTC at 24, went through tests etc at 25, ICSI at 26 / 27 and moved onto adoption at 28 and I am 29 in a few weeks. I am childless because my husband is infertile so people can say I have time on my side, I could leave my husband and have a child with someone else etc but none of that changes the absolute heart break and loss I have gone through. On this forum I have always hidden my age because when I came to this forum I was so low and desperate that I couldn't risk being told I don't belong again. Having read multiple negative comments about women in their twenties I decided not to lie but to say nothing. 

For this reason I feel that instead of splitting groups off then you need to have a policy that people need to have complete respect for others and recognize that whatever our backgrounds we have all suffered greatly and have the same right to support. Everyone will initially find someone in the group hard to deal with on walking in but if everyone respects each other then that would pass as you get to know each other. 

My clinic ran some support groups but I didn't feel comfortable going - I was really pleased when we finally got referred and were given this information because I was desperate for support however after going to initial things and being given awful looks and whispered about by women who were 10 to 15 years older than me was so hurtful I didn't go back. They made it clear they thought I didn't  have the right to hurt because I was young. 

When I was 15 to 18 I used to volunteer running youth groups for early teens and a woman in her thirties was going through IF after Clomid, IUI she finally had her child on her 3rd IVF. During this time I was a sounding board and support for her at times something none of her same aged friends could manage. The reason I was able to do this was simple the only thing I ever dreamed of was being a Mum so I simply accepted that what she was going through was the single most painful and awful thing in the world. I didn't tell her to focus on the positives or all the other ridiculous things I just listened and sympathized with her pain. 

Fast forward 10 years and I was in her position but on top of that just before my first ICSI my sister my only support emigrated (her husband is foreign), my father in Law and grandfather were both diagnosed with terminal cancer. They both died and were buried during my first ICSI. All my friends told me to focus on the positives ICSI gave me a 25% chance of being a Mum instead of the 0% chance I had before. However they all decided to TTC out of fear and had their children. 

My Mum who is normally there for me 100% was nursing her dying father and I was holding my DH's family together Monday to Friday and travelling to support my Mum and Grandma and hold them as they cried on a weekend (oh and travelling over an hour each way for bloods etc and suffering breathing problems due to severe OHSS) . Yes I was only 26 / 27 but I had already had to deal with IF and was holding two grieving families together with no one around me who had any emotional capacity to support me. 

So people can judge me for being young and not really getting it but I feel life has thrown enough at me to warrant people taking me as they find me instead of judging me on walking in. 

I ended up signed of work for 2 and a half weeks and having a bit of a break down to the complete surprise of everyone round me who just said but you always just cope with everything. Maybe if I had had a support group to go to I still would have broken down but at least there would have been people who understood why.  However if people had just made snap judgments about me based on my age ( I also look younger than I am ) that probably would have pushed me even further over the edge. That is why I feel groups need a we accept everybody has equal right to be here policy. 

One of the great things about adoption for me is that people have just accepted me. It also has the great advantage that our situations aren't going to change apart - we will adopt together  . You can't get that with TX some people's will work, others won't, some will have losses others won't. In my view to support each other people need to accept that we have all been through massive loss and not compare who's situation is worse / most painful / deserves most sympathy and just focus on the fact we all need support. 

With regards groups I think it would be good to have a focus personally and to meet in a hall type place as many people don't want others to know and may bump into friends or family in pubs etc. I think perhaps have each session having a focus so new people can have the comfort of joining a structured session however also that you don't have to join that and can just gossip. Then after the session general chat time so relationships can build. 

I think leaflets in a  GP's surgeries is a good idea also perhaps at the specialist hospitals. My only worry with GP's is that I have hugged and sympathized with many a heart broken girlfriend crying into her glass of wine in the pub because they have been TTC for two months and it hasn't happened yet (then obviously it does a few months later).

I am happy to do that in that setting but I wouldn't have wanted them turning up to support sessions for those going through IF not sure what rules for being able to attend but there would be needed but I think there would need to be some. Obviously I wouldn't want to say a diagnosis because unexplained is just as hard so not sure how you would manage that aspect.


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## goldbunny (Mar 26, 2012)

diva your post starts with the best of intentions:

For this reason I feel that instead of splitting groups off then you need to have a policy that people need to have complete respect for others and recognize that whatever our backgrounds we have all suffered greatly and have the same right to support.

but then you seem to recognise after thinking about it a bit that it just isn't possible to be that idealistic about it:

I wouldn't have wanted them turning up to support sessions for those going through IF not sure what rules for being able to attend but there would be needed but I think there would need to be some.


see i think that even though someone might be 21 and only have tried for 2 months, they are still desperately in need of support and good information. It's clear they can't sit in the same group as someone like me and understand my situation...but that doesn't mean their tears are not real. splitting groups is better than excluding people altogether, we need the right information to be out there. You think nobody understands you because you're only in your 20's? i spent a whole decade in mine....just because i'm now 43 doesn't mean i didn't cry 29 year old tears at the time. in fact i specifically remember doing so, because i had always wanted a millenium baby - i just always though it would be my third... then my first... then realised even that wasn't going to happen. i wasn't born old....it just happened to me while i was busy crying....


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## moo84 (Oct 14, 2011)

Hi Dudders,

I think you've got some fantastic thinking points from Goldbunny and DIY diva, I'm not sure I can add much else!

I would say though that if you can make this work (and I have faith that if anyone can, it might well be you!) it would be fantastic, and maybe a start to people feeling that IF isn't something they have to be ashamed of and avoid talking about. However, I think you will need to be really careful about where the groups are held, and how they are advertised. - I live in a very rural community, and as we haven't made our fertility issues public I would have big concerns over attending a group where anyone seeing me entering or leaving would 'give away' what I was there for! (and I realise that this is only making the 'taboo' side of IF worse, but I'm sure many other ladies would feel the same!)
Also, DIY diva's point on inclusion criteria is very valid - diagnosis/ length of time ttc both have a big potential to exclude people who would be very in need of support, but I'm not sure what other criteria you could use...
Some thought would also need to be put into what happens when people may have a successful cycle - for someone dealing with a negative cycle this could be really hard, but feeling that you are suddenly unwelcome when you have had some success would be very hard. This is one of the advantages to online support with sites like this - you can instantly access people in a similar situation to you however quickly your situation may change for the better or worse....

To try and answer some of your actual questions (rather than my random rambling!):
I like the idea of meeting people in person, but in reality I haven't ever pursued finding out if there is actually anything in my area (I've assumed not) and have instead used online support here and confided in some close family and friends.
If I was going to attend a group, as I've said above I would want to feel secure that people not involved in the group would not know what I was there for - so maybe in people's own homes?
I would be willing to travel maybe up to 20 miles for such a group - for me that's the distance to the nearest big town - which would help with the anonymity side of things.
I would think that having a mixture of themed discussions and time for 'general chatter' and relationship building would probably work quite well.
I think it would make me initially more comfortable if the person running the group had some experience of infertility, although at different points in my journey it would have been very difficult if they had become pregnant themselves. 

I hope that doesn't all come across as negative - I do think you have a good idea, and wish you lots of luck with it hunny  

Moo xx


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## LittleL77 (Jul 14, 2012)

Years ago it was part of my job to 'facilitate' a cardiac support group run by the hospital. It was loosely related to cardiac rehab - anyone who had suffered a heart attack could attend and the sessions were semi-structured to allow for socialising as well as the health promotion aspect. 

The philosophy was based on the fact that the only people who could truly understand the impact of a life-changing diagnosis of heart attack (treatment was not as specialised in those days) were those who had experienced it first hand. Sounds pretty good at face value, but the group was a cataclysmic failure. Here are some of the lessons learnt;

- The lead Consultant thought he was addressing patient need but cast the net too wide. 

Depression after heart attack was common with 'lack of understanding from family/friends' being cited as a major root cause. So, what could be better than a support group of patients with first hand experience and a trained cardiac nurse on hand to facilitate? 

The problem was that each patient had a very different experience; non-smokers (for example) seemed to be of the opinion that the smokers had largely brought the heart attack on themselves and thus lacked any sympathy. Those who perceived themselves to have healthier lifestyles became more despondent that they found themselves in the same room as the smoker/drinker/overweight people. Frankly, the ex-smoker/drinker people and those who had successfully made lifestyle changes (such as lost weight or taken up exercise) were worst in terms of being supportive as they tended to be all 'mightier than thou' and full of advice that they weren't really qualified to give (such as recommending fad diets or inappropriate activity advice) In a nutshell - supportive friendships forged within the group were very rare indeed. Most people only attended once or twice before writing the group off as a waste of time (from evaluation cards). There was a core of regulars but they seemed to attend for the free tea and biscuits - they refused to engage in any health promotion activity and spent the whole time comparing ailments and who had had the worst week health-wise. They almost revelled in their ill health and shunned the rest of the world 'who couldn't possibly understand how dreadful their lives had become since the heart attack' -  professional patients in every sense of the word. As the facilitator you would be faced with them openly disregarding medical advice (there's not much point in me giving up smoking now - i'm stopping taking my tablets because they make me tired) without a hope of breaking through their fatalistic attitude. Plus, they outnumbered you at least 5:1 on any given week and their bad vibes often spread to newcomers in the group that day!!!

- There were age discrepancies

The age of the patients could range from late 40s - early 90s - there was often a huge generational gap that the group could not assimilate. Pitching at the younger members alienated the older members and vice versa.

- There were gender discrepancies

Men and women had inherently different experiences. This also extended to spouses - the 'us' of the heart attack sufferers and 'them' of the concerned (or otherwise) spouses was NOT healthy for relationships. The group just couldn't cater for both without sitting totally on the fence and helping neither

So, the philopsophy of promoting psychological wellbeing through a social support network ended up being somewhat lost. Of course, the NHS wasn't in a position to narrow the target audience for fear of being exclusive - but the key would clearly have been to carefully define the group characteristics rather than an 'anyone and everyone' policy. 

In terms of Infertility - the obvious divide is between those undergoing treatment and those for whom IVF is either not an option or not desired. You would HAVE to keep those groups separate. I can expand on why if you want me to. (I was in the group for whom IVF was not an option before anyone goes mad at me)

Would the group be primarily for support or distraction? Again, it can't really be a mixture although I am talking about the primary motive. Clearly there would always be an element of both. Those looking for and needing a lot of support (emotional, psychological, practical) would potentially not mix well with those who wanted to attend to get away from it all or to fill a gap - for example a group of women around the same age without children who want to socialise with like-minded women without the potential heartbreak of everyone going home at 9pm because they have to be 'up at 6 with the kids' - that sort of thing.

If the group is mainly for support, it is often better to have volunteer counsellors (ie. those who have experienced IF and who are ready and willing to support others) available in a more professional capacity to those who need support rather than looking at forging friendships as the discrepancy between supporter and supportee is not really conducive to a balanced friendship in the first instance at least.

Aiming for a purely social focus is perhaps more risky because people either gel or they don't and false 'friendships' are pretty pointless. I'm no expert though - dating websites keep going, and local meets for people of various age groups/singles/interest groups often do fine so there could be lessons to learn from the more successful groups like these. It might be safer to see the formation of deep friendships as a bonus rather than an objective.

The first step will be to carefully define your group aims and objectives - far better to start small and exclusive with a view to branching out and extending/diversifying than having a big wide remit and letting the group evolve without direction (see above). Perhaps start with EXACTLY what YOU would ideally want from a group -  you might have a list of several things but better to choose the top 3 and then compare with others who you feel are in the same 'league' as yourself and define your group as such. That way, people will easily be able to decide whether the group is right for them - you are not taking anything away from people in other situations BUT you do need to protect your members. Imagine having to spend a session consoling a 22 year old who has been ttc for 3 months (who's to argue with her if she is distressed and considers herself to be infertile?) when the rest of the group is at least 10 years older and have been ttc for years and years!! Similarly, it can be hard for those with no children to relate to those with secondary infertility - it doesn't mean that those with secondary infertility don't have a right to support, it just means that your particular group is not the right forum for that support.

I don't mean to be presumptuous, but what about a support group for women (possibly within defined age category/perhaps not) who have been having fertility treatment (?of any kind) for several years (maybe define >2 years/maybe not) who have finally been successful only to suffer early loss (<12 weeks). You may need to broaden or restrict these criteria depending - but this way the group is very clearly defined and you avoid the risk of competitive infertility. There is nothing as soul destroying as sharing your loss only to have someone pipe up with 'well, i lost my baby at 20 weeks' as though that makes your earlier loss less painful (you get the idea).  With common fundamentals, the group can bond over the other stuff that comes along with the journey - the insensitive family comments, the shopping centre debacles, other halves (they could maybe form a splinter group if yours is successful  ), finances...

Sorry this is so long - it probably muddies the waters more than anything else, but there are so many 'support groups' that totally miss the point because of lack of forward planning. You have such a wealth of experience to make a support group work - but it would be a mistake to try to solve all the problems of the world rather than concentrating on a bespoke sector of that world and doing it really well. Good luck x


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## -x-Lolly-x- (Feb 3, 2012)

I think age is irreverent, time trying to conceive and/or diagnosis should be the deciding factor. Imagine a 21 year old having just been told she is in premature ovarian failure with no hopes of having her baby. Isn't her hurt just as valid? Also a girl of 28 may well have gone through the same process as an older lady, they may have just started trying younger. It's a very sensitive subject and one that needs to be handled carefully to ensure no one feels isolated or excluded when already struggling xxx


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## Mummy DIY Diva (Feb 18, 2012)

Little 77 you make some excellent points I totally agree that there would need to be a divide between those that can never / no longer have treatment and those that are having it. 

Just in my defense /  explain anything I have worded badly. 

I wasn't trying to say that no one understands me because I am in my twenties I was trying to say that people can tend to lack empathy or see me as not deserving support because I am in my twenties. 

My comment about someone who has been TTC for a few months was not to say their pain wasn't real it is that is why I foresee they may want to attend groups. I was trying to say that if I had attended an infertility support group I would want the people there to be infertile. 

My worry with splitting further than Little's suggestion is that the groups would become some fractured and small that it wouldn't offer people very much. For example a woman who goes during treatment would be in the going through treatment group, then if she got pregnant she would move into a pregnancy group, then if she had a loss she would move into a loss group. And this could all be in the space of 10 weeks. I just worry that much moving of groups many not be very helpful however as someone else said if it is for support not building any relationships then perhaps it would be. (I am no expert I just figure that the more varied the opinions the better decision can be made in the end.) 

I do however think that to start it going incredibly specific then judging and widening based on how it is or isn't working is an excellent idea and probably the best way to get it off the ground. 

I guess it would be impossible to suit everyone


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## Dudders (Jun 18, 2012)

Thank you to everyone for such valid points - everything is helpful.

My only reasoning behind considering fracturing groups is to appeal to those that might find it too stressful to be part of a group that is made up of people from such different places.

It certainly has to start small and build, and it's a fine line where to start.  People can often feel embarrassed about attending such things and so I would expect initial turn out to be small - which in turn means you need to include anyone that wants to come!

The group I went to had just five people there and it was clear that some felt the need to justify being there as they were at such different stages of their journey.  I could imagine that a couple of them may not return - not because they were made to feel unwelcome but because they themselves felt out of place iyswim.  That is just my supposition to be fair and why I'm seeking the opinions of the people I would like to reach!

Lots of valuable comments and I appreciate each and every one of them - please keep them coming x


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## LittleL77 (Jul 14, 2012)

You know, actually...having seen a few of the other comments...

Age is probably irrelevant - it would depend on whether the individual felt that they would fit with the group dynamic (providing they could identify what that would be). A similar example would be someone wanting to join a hill walking group - it wouldn't matter if they were in a different age group if their experience and expectations fitted well with the rest of the group. Defining other parameters could sort this out.  I didn't start TTC until I was 33 because that's when I got married - I forget that people start TTC at what I would consider 'young' because their situations are different - sorry about that  

Regarding the adoption group - the key to the success of that group for support will have been the shared objective, ie. getting through the adoption process. The motivations for adoption could well vary between group members but there is still a shared objective at the core. I think this is the key to the success of any support group - the intricacies can vary but there needs to be a core purpose and each group member needs to share this in order to get what they want/need from the group and also to contribute positively to the group. It is specific, measurable and achievable. 

It is probably worth closely examining good and bad examples of support groups in society in this way to give some clarity to Dudders' support group


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## Cloudy (Jan 26, 2012)

I think this is a lovely idea, but very very difficult to achieve.

A few years ago I ran a support group, assisted by another lady, for about a year. We arranged meetings in pubs/coffee shops via a forum and email/text. Sadly despite there being over 20 ladies it didn't continue - people would cancel, or never turn up again, or they would get pregnant and then weren't interested.

There has been a lot made of age on here, but we never really had this as a problem. It was mostly personal circumstances that caused "rifts" and then everyday life that got in the way. 

I dont think im explaining myself well and maybe if i give an example it might help! We had a lady who had a health condition causing weight issues and had 5 year TTC battle, but too high a BMI for IVF.  Then we had a lady who was 40+. Then we had a young couple who couldn't get funding for IVF and couldn't afford it. We also had a lady who had a hysterectomy and a marriage breakdown. Although all the ladies had the same IF pain, it was hard for people to understand each other when they (at times) felt like everyone else was more "fortunate" than them - does that make sense? 

It was basically that the group was it's own worst enemy as people weren't always able to accept each other. Also, when we had people start treatment they didn't always feel up to it, and then if treatment failed they didn't want to come to a meeting and face a pregnant woman who they felt (at that time, because of their own grief) was less deserving than themselves.

I know we always want to think we are happy for other people and accepting of everyones different battles, but it isn't always the case all the time x


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## Dory10 (Aug 6, 2013)

I think this is one of the most dificult aspects of IF - Having ttc for 3 and a half years all of my close girl friends fell pregnant very quickly (one is now ready to have her third), noone that I knew experienced any issues whatsoever and so although they've tried to listen, they really don't have a clue and look very uncomfortable if I try to discuss any aspect of treatment or my feelings.

I've found this site fantastic, even just reading other threads to gain information and finally feel that there are other people out there like me and who genuinely understand.  I'm 33 and my DH is almost 35.  I'd really appreciate a face to face support group but can see how hard it would be to organise.


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## goldbunny (Mar 26, 2012)

I thought of something else during the night, someone on another forum I go to (a general social one, not a specific one) was talking online about setting up a group for people with eating disorders and one thing that came to light quickly was the need to have a plan in place for helping those who actually need physical or emotional or psychological immediate professional help. 

I know IF doesn't tend to be life-threatening as such but I think any kind of actual support group needs a 'written-down' plan of how to deal with someone who is in clear need of a professional.. i'm not sure about the ins and outs of that...


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## Bumble Bus (Apr 23, 2013)

Hi,

Thought Dudders and those who responded to this thread originally might be interested in this - http://www.lfc.org.uk/fertility-circle

I saw something on it in the Evening Standard a few days ago. Obvs only helpful to those in/around London.

Dudders, I thought for days about replying to your original post but thought it would end up being a dissertation! I would love the opp to go to a good support group but think there are so many difficulties associated with it. The closest thing to this I have done already is go to a 'Preparation for Parenthood' course which is run by the Donor Conception Network for people contemplating but not conceived with donor gametes. It was amazingly helpful in helping us meet people who were in the same situation and we have kept in touch with some people. However it's amazing how quickly people's experiences deviate, eg we're going ahead with donor but had 2 x BFNs, others have sadly called it a day, others are going for adoption, others are still thinking etc. This was from a group that only started with about 10 couples and we know what about half are up to.

So even though we were all in the same place at one point in time (which made the experience of getting together and sharing experiences so brilliant), it's polarised really quickly and most of us probably wouldn't consider ourselves to have that much in common now in terms of what we're going through.

I feel like the clinics should have 'cycle buddies' type groups where you can get together with people cycling at the same time if you want to. But bluntly, I do think there can be a degree of competitiveness in infertility and I'm not sure it would be a healthy dynamic all the time.

The reason I didn't reply in the first place was I didn't have any helpful suggestions which I have just proved to still be the case!!!

Anyway, I *might* go to the group that I linked to and if I do I will post back with my thoughts.

x


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