Are support forums such as this one u... - Action on Postpar...

Action on Postpartum Psychosis

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Are support forums such as this one useful? What do you think of 'Peer Support'?

jess_at_app profile image

Tell us what you think of asking & getting answers to questions in this way. Are there any benefits of talking to others with experience of PP? Are there benefits and downsides of reading other people's posts? Does this add anything to information that can be gained from health professionals? Does it feel like a PP community? What else can we do to build a sense of community?

23 Replies

I think especially with an illness like PP, support, tips & advice from people who have experienced it is absolutely vital! As most people never meet anyone else who had/has it, sharing experiences removes the massive feelings of alienation & isolation - when I was ill, I'd have done anything to chat with someone who'd recovered just to feel normal & give me some hope! Also, as info is hard to find & you're never sure what's up-to-date or not, it'll help to direct us to good sources. An online community will bring so many of us together where it's just not possible face to face. I think it's great & want to see more of this!

HopeafterPP profile image
HopeafterPP in reply to HKPhooey

I agree, peer support is vital! When I was ill, the worst part of the depression that followed the psychosis was the numbness and hopelessness. I had no hope that I would ever recover. No hope that I would be able to love my baby and be proud of being his mum. I felt terribly isolated and if I could have met someone or even read stories of real-life mothers who'd been there and come out the other side I think I may have seen a chink of light in the darkness. None of the professionals around me spoke of women they had cared for, they'd only mention the research that shows women make a good and full recovery from PP. Whilst that research is true, hearing that from a Dr and chatting to recovered mothers online are two very different things - I think only the latter can really impart a sense of hope.

When you or a loved one are experiencing an episode of PP it is very hard to believe that you/they will ever fully recover an become the person they were before the illness. Being able to speak to someone who has been through it is hugely comforting and will help loved ones to understand what it is like for the sufferer and how to help them through this tough time. It will also help them to believe that, given the right support and help, they will fully recover. A peer support forum has been very much needed for many years and now thanks to The Big Lottery funding, has been made possible, great news!

Personally I really like this format for a support forum. It's also a very good way for anybody to find out imformation about PP - raising awareness is key to battling stigma and making sure that every pregnant woman knows what to do if she realises something is very wrong after giving birth. This question and answer format seems very accesible and it makes it easy for friends, family, professionals and sufferers to read parts they are interested in and to ask for specific help.

Wanting to connect with others who understand our experiences and who can bear witness to our pain, who can empathise and offer support is probably a universal desire which is why there are online forums such as this . For me, when I was ill with PP I would have gained so much from meeting (probably a different medium for different stages of recovery) someone who knew PP from the inside out. The biggest benefit for me of talking to others about our experiences of PP is normalising the illness and the things that happened to us. There is nothing “normal” about having a psychosis but what I mean is when I have talked to others online and now met women face to face through the APP network, I have realised that their experiences have been very similar to my own – even some of the delusions I experienced overlapped! With PP it is normal not to bond or love your baby for a long time, with PP it is normal to act bizarrely and have very strange thoughts, it is normal to feel extremely frightened and traumatised, it is normal to feel robbed of motherhood, it is normal to take months and not weeks to recover. Without speaking to other PP survivors or reading their stories online I would not have known that any of those things were normal about PP.

The downside of reading other stories is that if you are feeling low or vulnerable or still in the middle of a psychosis I think the other person’s experiences can impact you negatively – even ruminate in your mind and become your own problem. So I think as a sufferer and even as someone recovered we always have to be mindful of how strong or how fragile we may be feeling and make sure that we look after ourselves. For me even 5 years on, I have to take a conscious break from choosing to think or read about PP. So you will see me on here a lot and then having time off!

In terms of building a sense of community, just carry on doing what we are doing will build it up I’m sure. Sharing our stories, supporting each other with empathy and kindness, even laughing together as only someone with PP can laugh, with help us feel like a positive community. Joining the APP Network has really helped me feel part of a wider community of women who understand.

andrea_at_app profile image
andrea_at_appVolunteer in reply to HopeafterPP

Hi HopeafterPP, thanks for the comments. It's a really good point you make that reading other people's experiences may impact negatively on you if you're feeling fragile & may trigger some thoughts & feelings - so yes, use your judgement, read them with caution. If you're not feeling strong enough, don't read them & save them for another day. x

From a partner's view I think they're really useful, as long as you know that's what they're suffering with. I found incredibly difficult in the early stages to understand what was happening to my wife, let alone find a name for it. Then to actually find real info once you hear of PP, at the time was almost non-existent.

There were times I would trawl through the internet looking for anything, or even helpful forums but very little would be there, it added to the sense of being on your own and finding your own route through a minefield. To be able to hear that other partners have been though similar experiences and how they coped, would for me have been a small amount of comfort and that I wasn't the only one to go through the experience.

andrea_at_app profile image
andrea_at_appVolunteer in reply to Simon_at_APP

Hi Zapple, welcome to the site! Yes I agree, I can fully relate to the lack of information 'adding to the sense of being on your own and finding your own route through a minefield' - really well put! Interesting that partners feel this just as much as the women do & yet perhaps get even less information than we do. Thanks for the comment.

There should be more support for partners. I had an episode following the birth of my daughter. My husband and I ignored all advice following my recovery and I had a relapse 10 months later which shattered my confidence and has now labelled me as bipolar. My husband wrapped himself up in the Internet and we stopped communicating properly, 3 years on and things are mostly back to the way they should be. It's hard. He talked to his friends about it but nobody understood. My CPN suggested he could join a carers support group but he hated the idea that he might be a carer.

This is a fantastic source of information and support. There was very little information available when I had PP. It was a terrifying time for my family aswell who were very much in the dark about the illness. None of us had heard of it and it was such a shock and so isolating. Having peer support is vital. When I met other women who had been through PP it was a huge help to me and still is.

Florence21 profile image
Florence21Action on Postpartum Psyc

I agree with HK Phooey, a forum like this is a fantastic way of getting and giving support - and this is especially important for a condition like PP which has an almost invisible public profile. It's relative rarity means that even the health professionals may not have witnessed it before and know little about it so the information they give you and your family can sound rather textbook and therefore worrying.

Obviously getting the best medical care is paramount, but to be able to communicate with other women who have been through it and survived is incredibly valuable and so encouraging when you need it most.

andrea_at_app profile image
andrea_at_appVolunteer in reply to Florence21

Hi florence21, welcome to the site & thanks for the great comment! I feel the same about the 'invisible public profile' & feel that it's been a hidden illness for far too long. I definitely had the feeling the information I was getting from the professionals was from a textbook & not from real women & yes, you're right, it was very worrying!

Hi, I feel that this group will be an amazing source of comfort and support for the suffers themselves and for their family and friends.

After my episode of PP which was 4.5 years ago there was very little geared towards PP. However those forums that I did stumble across were very limited and remained at large fairly inactive.

I agree with Florence21 regarding the 'invisible public profile. I have just recently given birth to twins and in the 0-5 book that is given out from the midwives at the booking in appointment just had one line in it about PP. Saying its very rare, and that was pretty much all the information that was given, I am hoping this forum will be the start of something special xx

andrea_at_app profile image
andrea_at_appVolunteer in reply to

I agree about the 0-5 or 'baby's first year' baby books - it's really frustrating that PP only ever gets a brief paragraph - grrr! x

I agree with all the comments. Having had PP almost 6 years ago it was a frightening and isolating experience. I haven't met any body who has had it so am finding the blogs on this site so informative and moving. Not only is it a lonely condition but it is one that robs you of the most precious time of your life. But with time things do heal. It's just a very frightening thing to go through on your own without your partners support as I did. Building a community of support is a good and precious resource to all who have experienced or been affected by PP in some way.

andrea_at_app profile image
andrea_at_appVolunteer in reply to Isabel27

Hi Isabel27, yes your comment, "But with time things do heal. It's just a very frightening thing to go through on your own...", really shows the importance of communities like this. That must have been incredibly tough going through it alone! Thanks for posting x

Hi there, this forum is an excellent idea. Great to have this kind of support.

Hi all, I totally agree ! If only we had had this technology 27 years ago! I would say that one to one support from someone who had recovered from PP when I was undergoing treatment, I think would have helped me personally and I hope that as a community we can explore ways of supporting new sufferers as well as each other.

If when I was ill either me or my family being able to speak to someone who could say that I would get better and that I would return to my old self would have been so valuable. I agree about the invisible public profile but I think that is due to the stigma that surrounds mental ill health generally.

If only there had been such a forum when I had an episode of PP in the 1980s. The experience was bruising: a frightening week in a general psychiatric ward followed by two months recovery in a MBU. I recovered well, but as other sufferers have described, I emerged anxious and with a massive loss of confidence.

Nobody wanted to discuss my experience. My family didn't mention it. Even the GP who had sectioned me never asked me how I was when I returned home with my three month old daughter. I was just expected to move on. Only my NCT teacher was prepared to engage with my story. My husband and I coped alone as best we could with this huge event in our joint history.

I gave a lot of thought to the stressors which may have contributed to my episode of PP, it had been a long labour, a hospital birth and a tiring and bleak experience. I wrote up the birth story, which exposed several avoidable poor practices ( hopefully now a thing of the past everywhere). The NCT teacher tried to use it and other user reports as feedback for the hospital, but as she said, " but you've been ill so they can just say you are not remembering it right".

I narrowly escaped ECT in the first psychiatric hospital and have a detailed recollection of my racing brain, my compulsive note writing, my unnerving mixture of sanity and delusion.

I needed to talk about it all, and would have so valued talking to someone who had had a similar experience. In the next three years I did tell the detailed story to two or three fellow mothers with whom I was friendly, but one of these then decided to take drastic steps to prevent the friendship between her child and mine. I realised that mental health was a dangerous flag to raise in a small community, and that it could impact on my children's happiness as well. So I set myself to becoming better known for less contentious interests and abilities.

Just seen this thread/ question - I think this forum and the idea of Peer SUpport is a fantastic one. As others have said, the opportunity to speak to someone who had "been there" would have been invaluable to me in the early days, in fact in the weeks, months and even nearly 3 years now since my discharge from hospital. The shared experiences of birth, early days, and the long road to recovery, shattered confidence, obstacles of all shapes and sizes would have given me more hope - although I have a fantastic husband who believed in me and our little family and that things would get better, which they have. It gives such perspective to your life and that would be the positive thing I have taken from this whole experience - if that's possible. Shared experiences of involvement with professionals has been really interesting too. There is clearly a wealth of information out there and it's so important to share. Like all new mothers, I've made friends that I wouldn't have met if I didn't have a baby - through a local playgroup for example. I don't shout about my pp experiences but I have told some people and they are really amazed by it I think and are supportive, which has really helped me too. A mixture of support works well in returning to normal (whatever that is!) I think.

As a health professional with a particular interest in PP and PND and Anxiety,forums like this are very useful, in our local area we have groups that are for women that suffer from PND, we offer peer support to these mums and all have found talking to them very helpful.

We are hoping to set up an App or similar forum locally with professional and peer support

Any suggestions or ideas would be very welcome

This forum has helped me to start to process the idea that I might be ill and to find other people who have suffered has left me feeling much less alone. The kind, supportive feel to all the replies make this feel like a very safe place to write even thoughts which I haven't verbalised to anyone else. I'm glad I've stumbled across this. Thank you.

Naomi_at_app profile image
Naomi_at_appPartner in reply to ontheup

So glad you have felt supported by the forum. Well done for reaching out and using the support of others early on in your diagnosis.


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