Sharing with mothers groups

[uksarah]

Hi Everyone.  Has anyone ever shared their pp experience  with mothers groups? Like I'm sure most of you know there is no info shared about pp in antenatal groups and when it happens to you you have no clue what's going on! I literally thought my body was giving  up and I was going to die and there was nothing I could do about it. 3 ambulances later I finally got the help I so desperately needed! Anyway I'm thinking sharing my story might just freak so many mums out yet at the same time I feel that they need to know this hideous illness is possible in subsequent pregnancies. I have always thought that they see me as the quiet, reserved, shy, odd mum mainly because I didn't attend catch ups for so long after my son's birth and I felt ok to do so and maybe sharing what happened might help them understand.  Would be a huge step for me. What do you all think?

[Kat_at_APP Volunteer]

Hi Sarah - this is such a good question!

Firstly - well done for getting out and about to mums groups in the first place.  That's a BIG step.  I suddenly found (from having a lovely normal sociable pregnancy) that 3 months of PP later I had very little in common anymore with my NCT buddies.  They were all talking about breastfeeding and slings and reusable nappies and I was just thinking *hey I'm so glad I'm still alive. And my son is still here too!*

That said - I'm really glad I got back in touch with them all.  They knew I'd been in psychiatric hospital and accepted me back in the fold no questions.  This gave me more confidence to tackle the local playgroups, and the children's centre too.  

At first, for the first 3-6months I think, I would describe my illness and absence as a "severe postnatal depression".  I didn't yet feel able to use the word "psychosis".  I worried people would be scared of me or think I was unfit to look after my baby. 

Gradually however my confidence came back and at around 6 months after my discharge from MBU I "came out" to all my facebook friends, and mummy friends too, and from then on there's been no stopping me. :). It is liberating to tell someone about PP and for them to know more about the condition and to gradually break down the stigma and information barriers.  I know of women who've been helped by friends, and friends of friends, because people knew what had happened to me - and therefore how to get help.

Hope this is useful and all my very best wishes to you xxx

[Hannah_at_APP Administrator]

Hi uksarah,

This is a really interesting question and I guess everyone will have their own take on it.  For me, I attended a baby group locally after my 1st child (when I had PP) and didn't know anyone from before, so it was doubly difficult!  I got home from 3 months in hospital/ MBU and then a few weeks later, my CPN suggested the group as it was something I could walk to, not being able to drive after giving my license up after being ill.  To be really honest, it was hideous at first!  The Mums all seemed to know each other, the chatter was all about breastfeeding (which I hadn't been able to do) or what their darlings were doing in their nappies, how hard it was yet how much they loved it etc etc.  At times I wanted to shake them and let them know how lucky they were, as I wasn't feeling that way at all, sadly.  I badly struggled from a complete loss of confidence and was pretty much a shell of the person I'd been before.  So I was probably seen as the quiet and reserved one, like you describe too.

The positive bit of going to this group, for me, was meeting a couple of other Mums, who were equally "out of place" at the group, as they didn't know everyone, and I think also felt like the odd ones out.  Slowly we began to be a little "group within the group" and I told them about having had PP - it was the usual "how was your birth and early days" question, so I just took a deep breath and told them.  Not all the horrific details, although that did come out little by little, later on.  I think I described it as a sort of extreme PND, but like the opposite as I was manic and had to be hospitalised.  

I tried to describe it quite informally, "like losing my mind", or "being completely out of it" - not to belittle the illness, but I suppose not to be too scary.  It felt like a weight had been lifted and I started to enjoy going each week - previously, I'd just forced myself to turn up and try and smile through it, whilst not really enjoying it.  It was good that there were other babies there for my son to interact with, and now 6 years on, I keep in touch with those other 2 Mums regularly and see them as proper friends, not just women from that group that I struggled with.  And our kids are friends too, which is really lovely.

After I had my 2nd child, I remained well.  I went to a different group (as we'd moved) and unfortunately that was quite cliquey too and I didn't really make friends there.  One of my neighbours had mentioned it, as she'd had a baby at a similar time and knew about the PP with my 1st, but it was never really mentioned.  She went off and made loads of friends with the "in-crowd" at the group, and I think I kept going as there was 1 Mum who seemed to be struggling and I felt like I identified with her.  So I  tried to just chat about rubbish with her (not the breastfeeding, nappies etc) to show her that these groups can be hard, and I understood somehow!  It was also the same day that I dropped my eldest for a few hours at nursery, so I was out anyway and it seemed like a good excuse for coffee and cake!

I think the loss of confidence I had for a year or so after PP made me struggle with lots of things socially, at work too when I went back.  So adding a new environment such as a baby group, can be really tough.  In hindsight, I'm glad that I went and made those 2 good friends, as well as pushing myself to just turn up as I think it probably was helpful in my recovery.

I would agree that it's a huge step and one to think about, if you think it will help with the isolation you feel at the group.  I know that I can't change what happened with the PP and that it isn't my fault - anyone who can't take that, isn't worth your time and effort, to be honest.  You will know if it feels right, and if they are people worth having in your life, you will know and be accepted.  

I hope my long and waffling reply is helpful in some way!  Take care, xx

[uksarah in reply to Hannah_at_APP]

Yes very helpful. I don't know if me opening up to them might just freak them out and put them off having more children or just have a better understanding and I guess a better relationship with me. I really don't know but kinda feel like they should know something about this illness and I guess it's up to me to tell them. I've got enough other friends who know about what I went through who are fab. Not that worried if people think I'm weird or crazy or whatever.  That's their problem. I don't know really. Thanks for  your thoughts. Maybe just opening up to the ones I know best...

[Hannah_at_APP Administrator]

Yes, you're right and awareness is really important, sorry I didn't really cover that part of your question. I had pp "out of the blue" and still now, people think it can only happen to those with existing mh diagnosis, or who go on to get one. Being more vulnerable to it is something I'm personally more aware of now, but would agree that most people have no idea it even exists as an illness, or that it could happen to them. I certainly didn't, nor was anyone else I know.

Awareness raising is definitely one of the reasons I opened up about having had pp. If I'm really honest, staying well after my second probably helped even more. Society's expectation of motherhood being all "hearts and flowers, most amazing thing etc" probably doesn't help anyone to open up and say "it wasn't always good for me" but that applies to anything, pp or mh aside. I guess we're just extra aware of it because of our pp experiences. And hopefully better messages are getting out there now, in relation to pp and other challenges women may face.

So yes, I'd agree awareness is really important and if sharing our stories can help with that, even if it's just a little bit, then I think it's worth it. As with everything, a balance in individual cases! Xx

[Fenn86]

I agree that it is best if you can to just be totally honest with people. I had PP after my first baby in June last year and was in an MBU for 7weeks. I managed to start attending a baby group in my local area late last year and at first I didn't mention it to anyone I just said I was in hospital for a long time. I then volunteered to run the group and have been since January. One week there were only around 6 people there and another mum mentioned the beeches the MBU I was at. I couldn't believe someone else had been there too so I opened up about my experience. The reaction I've had has been brilliant. People were genuinely interested in PP and my story and I feel really well respected by the other mums at the group now. It is also a relief that I don't need to hide anything especially since I relapsed at Easter so my illness is very current. Good luck if you do open up and would love to hear how you get on. 

[BabyS_2014]

This is something that I can really relate to and can be a difficult one. 

I had PPP out of the blue following the birth of our daughter. Our first born. I had never heard of it and in our nct classes all they drummed on about was PND. So I was very aware of signs and symptoms. 

What makes it worse for me is I am a nurse and I have obviously heard of psychosis, and even cared for people with it during my career to date but still no idea on PPP. 

I had an 11 day stay on the maternity unit after my daughters birth and eventually got discharged home with psych support, Olanzapine and family help.

Obviously, people were desperate to visit and the first question I was asked was about my prolonged stay in hospital. 

To my absolute closest friends, some with babies already, I couldn't hide the truth. They would have know I was lying and I felt so much better sharing with them. They have all been an amazing support and constantly say they are so proud of me and what I have achieved since my illness.

It took me 4 months to tell my NCT group and it was during a meet up with our teacher. She wanted to hear all about our individual birth stories and when it came to me I just burst out crying. The group were very shocked but once I had pulled myself together I told them everything. They were most surprised about the fact that I hadn't shown that I had been unwell and seemed to be coping. I am so glad I told them as it makes me feel normal when we share common baby stories and I feel like one of them. They have been very supportive. 

With regards to baby/toddler groups I attend I haven't said anything. I don't want to be judged and it is quite frightening to others when you mention the word 'psychosis'. I wish I could be more brace and share my story but I just want to be treated the same as everyone else. 

The only thing I am considering is talking to a group of health professionals about my experience. A very close friend of mine is a Health Visitor and she has talked to me about doing this. She still feels strongly that it is not identified early enough both in maternity wards and the community. 

I think more information needs to be available at ante-natal and it should be discussed and given the same coverage as PND. I don't think it will necessarily change anything, if it's going to happen you can't stop it, but at least women and families can be more informed. 

For me, I might not have had to wait 7 days to get medicated treatment and been made to feel like an absolute nightmare patient in hospital while they tried to work out what was wrong with me!

Some information on support groups etc would be great too. This group has made me realise I am not alone and you can share intimate symptoms and feelings that you might not have been able to with people who don't know enough about it.

[Ellie_at_APP Partner in reply to BabyS_2014]

HI BabyS_2014,

It's good to read your post, it's really brave of you to tell your NCT group etc, and consider talking to professionals. It's great to hear you've recovered well too. 

Here at APP we're really trying to get the word out there about PP to professionals, and also to pregnant women so, like you say, everyone knows about it, and knows the symptoms. Sometimes I've heard people say it is 'rare' and they don't want to scare women. But the statistics are the same as down syndrome and we know that NHS test for down syndrome and everyone is told about it. Symptoms etc should be told to women in antenatal classes etc and that it can be rapid and sudden so that everyone knows. 

I just wanted to let you know that at APP we have volunteers who work as regional reps, trying to raise awareness in their area with professionals, families etc and also let everyone know what resources are out there from APP. If you would be interested in being involved do let me know as it sounds like something you might be considering anyway. At the moment we're coming to the end of our current funding but when we have new funding in a few months we will run another volunteer day then. 

Warm regards

Ellie 

[Shery in reply to Ellie_at_APP]

Hi..Ellie..i m shery from pak..thank you so much for all cordination and help him.my wife is recoverd.very hardworking..thanks God...and Ellie

[Lilybeth Volunteer in reply to Shery]

Hello Shery,

I'm sure Ellie will be really pleased to hear your wife has recovered, as we all are.

Take good care of yourself. I hope your wife continues to progress in her recovery.

Best wishes.

[uksarah]

Sorry what is an NCT group? Antenatal? Great that you felt comfortable to share. I don't know if I am. I have with family and a close friend but that's it so far. 

[Lilybeth Volunteer]

Hello uksarah

I think BabyS is referring to the National Childbirth Trust group.  Ante-natal is the time before baby is born.  I'm a bit apprehensive too about sharing so it's good to have the forum where we can 'speak' openly.

Best wishes.

[uksarah in reply to Lilybeth]

National childbirth trust, haven't heard of it. Maybe it's like plunket in nz! Cheers