33 years since PP!

[Vee82]

Hi Everyone, I'm currently in the process of completing an online course with Future Learn on Psychology & Mental Health Issues. It has inspired me to find out more about postpartum psychosis and lo and behold I found you. Wish I had the chance to share my experiences following my episode all those years ago. I was sectioned and hospitalised for 8 weeks following the birth of my first child. No previous mental health issues before or since, no problems at all with my second child. I was admitted with hypomania within a week or so of giving birth. It was as if my mind was on overdrive, although I had no insight at the time that anything was wrong. To add insult to injury, I developed depression once I got home. In the aftermath, I felt embarrassed, ashamed and very alone and lost confidence in myself. Apart from 1 outpatient appointment, there was no aftercare or the opportunity to discuss with anyone to help me come to terms with it. So I just buried it and got on with being a new mum. It has always remained in the shadows on my mind though until this week! I sincerely wish you all the very best and make the most of this wonderful opportunity to share your experiences and get support. X

[CathDuff]

Hi, thank you so much for adding your experience. Yes you are right, shame, guilt, confusion were my exact feelings following my first. In fact, as it went untreated, I lost 4 years of my life to it - confusion, memory loss, no interaction with my bubba. Having it a second time, identifying and treating it very early, has been deeply empowering and enabled me to come to terms with the trauma of my first.

I had never heard of anything like PP, only Pnd. This was why mine went unidentified, by doctors and health visitors. The second time my GP dismissed me as sleep deprived, but a very experienced health visitor identified it. Such a misunderstood illness and undocumented. I read so many baby books, and never read about PP. I'm so glad to meet all of these other mums, who have also experienced this very difficult illness. X

[Vee82 in reply to CathDuff]

Lovely to hear from you and Cath and you are right, PP does seem under researched. There seems to be plenty of information about PND and certainly information about bi-polar, schizophrenia, psychosis but very little research on pp. I recall wishing I had had depression rather than hypomania, as it seemed more acceptable, if you know what I mean. Until the other day I thought it was a different condition and didn't realise it was a feature of PP. If there was more research there would be a greater understanding of the condition which would help to identify those who may be at risk, early diagnosis, treatment and aftercare. I think we are all amazingly strong women who have had to cope, or are in the process of coping with, as you say Cath a little understood condition, which is frightening & not least having to cope with a new baby and possibly a bewildered partner.

[hackneygirl]

Hi thanks for your lovely message. x

[Vee82 in reply to hackneygirl]

You are very welcome. I hope you are okay

[bravesurvivor411]

Thanks for sharing your story! Im glad you found this forum too. It has been tremendously helpful for me. There is nothing like this type of forum/support for pp in the U.S. where I am. I appreciate every post!

[Vee82 in reply to bravesurvivor411]

Lovely to hear from you. I maybe an old hand with PP but new to social media! What a wonderful find and it must be a real support to you. Having a baby is a major life experience and can be an isolating in itself but having to cope with a post natal illness makes it even more isolating. The forum clearly demonstrates you are not alone. All the best to you.

[Ellie_at_APP Partner]

Hi Thanks for sharing your story, and welcome to the forum. I hope you find it really helpful - there are a couple of other mum's on here who had PP years ago, including one of our volunteer's Lilybeth.

Yes - the forum is amazing, I've found it really instrumental to my full recovery and to help come to terms with what happened and just not to feel so alone.

[rose89]

Well this message has inspired me to write my first post following the birth of my second child. I had PP in 2012 after the birth of my daughter and I had my son two weeks ago. The experiences couldn't have been more different and I am delighted that I have avoided becoming ill this time.

Whilst I do still hold some bitterness and resentment over the poor treatment I received in 2012, I do appreciate that I was (in a warped way) very lucky to have access to a MBU and that some other mum's (particularly many years ago when there was much less support available) were separated from their babies for much longer.

Best of luck with your course x

[Vee82 in reply to rose89]

Thanks for sharing your experience Rose and congratulations on the birth of your son and so pleased all has gone well this time. I was 'lucky' that I had my daughter with although it was on a general psychiatric ward. I can't believe I'm reliving it again after all these years but finding it empowering. Maybe I'm finally coming to terms with the experience rather than burying it!

All the very best to you.

Vee

[Jofo5245 in reply to rose89]

Hi, I do believe my mother suffered PP psychosis when she gave birth to me 42 years ago. Unfortunately my mum was and still is in and out of hospitals and still has severe psychosis. I lost the opportunity to have a mother because of many many years of misdiagnosis and the lack of support. ☹️

[Ellie_at_APP Partner in reply to Jofo5245]

Hi jofo

Welcome to the forum. I'm sorry to hear that your mum is still struggling with the psychosis and has been unwell all these years. I know a little of what you've experienced as my mum was ill on and off with schizophrenia throughout my earlier childhood though thankfully has been well for several years now.

Thankfully I do think there has been such improvements with diagnosis, understanding of the illness and care now, though there is always more that could be improved. Take care, talk on here whenever you would like.

[andrea_at_app Volunteer]

Hi all, what a lovely thread to read, it's wonderful (& so important!) seeing PP women talking & supporting each other openly - well done all! It's hard carrying our experiences round with us now even after having had chance to 'talk' on here etc., so I can't imagine how tough it must have been not being able to talk about it back then. It's heartwarming that all of us are a big part of changing things for the better.

My PP was 9 years ago & I'm still amazed by how much treatment, support & awareness has changed since I had it (I felt the support & awareness back then was non-existent), so Vee82, you must see a massive difference! We all know there's still a long way to go though, but things are looking really positive now & there are lots of people & orgs striving for progress.

Vee82, you wouldn't happen to be from the Midlands area (UK) are you? We're currently looking for women who had PP in the late 70's - mid 80's to chat about their treatment & experiences back then. If you (or anyone else) is from this area & had PP around that time, please private message me & get in touch.

Good luck with your Psychology & Mental Health course - great stuff!

[Vee82 in reply to andrea_at_app]

Hi Andrea, so lovely to read the replies and delighted to hear that things have improved, especially in terms of support and after care. The course prompted me to find out something about hypomania and was blown away by this site. I would love to have got involved Andrea but I live in Scotland so a bit far to travel but good luck with it and keep up the good work. I believe raising awareness of mental health issues generally it's really important to raise the profile of PP. At least there is not as much stigma surrounding mental illness these days

Would be very interested in hearing what support is in place, apart from this wonderful forum. Also is PP still mainly treated in hospital or can it be managed at home with appropriate support?

[Lilybeth Volunteer]

Hello Vee82

Your experience all those years ago sounds very similar to mine, although this year will be 40 years since PP followed the birth of my first precious son. Like you, I was sectioned, spent some time in hospital following A & E admission and transferred to what was then a Victorian asylum, without my son. I'm not sure how long I was there before being transferred to another mental health unit where my son was able to be with me. Altogether I spent six months in various psych units. PP after my second precious son followed a similar pattern, i.e. sectioned, ECT, etc.

I also felt ashamed of myself, partly due to the fact that in those days there was such a stigma to mental illness that my mother said at the time my 'illness' must never be spoken of either inside or outside of the home. At the time I wasn't told of a diagnosis and memories were slightly hazy (especially after ECT) so I thought it best that it was my 'secret'. I put the memories in a box marked 'do not open' and I never did until a chance meeting with the brilliant APP team ....

When my sons were grown men I replied to an article in the local newspaper by the then Dr Ian Jones (now Professor) explaining about research and asking women to contact the team. Dr Jones and a researcher kindly visited me at home with my sister present. That meeting changed my life for the better ....... that was the day I too came out of the shadows! When my sister confirmed for the first time that I had heard commanding voices, the question of why I acted as I did was answered.

Then when Dr Jones had sight of my medical records he was able to confirm that I had suffered PP on both occasions.

As I'm much older than many of my virtual friends here, I would like to reassure you that it is possible to have a strong bond with your children after suffering PP. My sons are very loving and their hugs priceless. Even more priceless are my treasured grandchildren. I know most here are a very long way from being grandmothers. I can honestly say that holding your first grandchild will be very emotional as you will realise all you missed in your child's early days ....... but on the other hand there are so many happy memories waiting in the wings.

Wishing you all the best with your online course; I'm sure your first hand experience will be invaluable.

[Vee82]

Hi Lilybeth, thank you so much for sharing your story, it must have been a terrifying experience for you. Wonderful that you had the opportunity to become involved in research and use your experience in such a positive way, as you continue to do in your role with this forum.

I totally get the 'do not open box', it is perhaps a coping strategy. It is too painful to open, the guilt, shame & embarrassment the desire to return to 'normal'. You just get on with life, but it remains in the shadows. In spite of that I do believe we are the stronger for the experience.

You raise an important point about bonding, it did not effect my relationship with my daughter one jot. I felt guilty in the aftermath, not being able to breast feed due to anti-psychotics, guilty because, although she was with me in hospital I really could not look after her very well, I was so doped up at the time, worried about whether it would affect the bonding process....all those worries. No wonder we popped those painful memories in the 'box' Lilybeth.

I think, understanding the condition and sharing experiences with women who really can empathise must be an important step to coming to terms with this frightening condition. It's taken me long enough, I'm 59 now.

I also must apologise to you all for my ramblings, I guess I have kept it inside for too long. I cannot thank you enough for sharing with me, it has had a profound effect on me.

Vx

[Lilybeth Volunteer in reply to Vee82]

Hello Vee82

I'm very grateful for your reply; a boost to my confidence. I agree that this forum is a great place to 'meet' mums who have experienced all the highs and lows of PP and truly understand.

Not to worry ...... I think I rambled on a little too but it's such a relief to write everything down that we have kept to ourselves for all those years isn't it? I think we are much stronger for the experience, although it was a long road to recovery and some days were endless.

Take good care of yourself.

[Ellie_at_APP Partner]

It's very moving to read this thread Lilybeth and Vee. Thanks so much for sharing your stories X

[Vee82]

Thanks Sunnyandwild, Lilybeth and other new friends. This might sound a bit weird but I actually feel proud of myself for having at last, the courage, and indeed opportunity to share those buried, but never forgotten experiences. I took my first my first 'action' yesterday by checking a local mental health information website, I contacted them to request they added the app link to the information on PP. Well second maybe, sent link to global fellow learners on the mental health course - futurelearn.com

My very good wishes to you all. Vee Xx

[Ellie_at_APP Partner]

Hi Vee That's amazing what you have done so far to spread the news of APP and raise awareness of PP. With time you do know that APP are always looking for more volunteers, including being a regional rep which is about spreading the news of APP and just raising awareness of PP in general. Just sewing the seed for you. As someone who volunteers myself the support/training I've had as a volunteer has been amazing.

Take care, it's so great to have you on here!

[Vee82]

Thanks sunnyand wild, thanks for your reply. I have joined APP and have been in touch with Mia. I want to try & understand the condition a little more first and see what is about in my location, check any training options then decide which is the way forward given my existing work/study commitments. Incidentally, I'm attending a development meeting with a local Mental Health Charity tomorrow for local agencies working in our area, I will be sounding things out for sure and will put APP on the map at every available opportunity. In terms of regional rep I'm not sure what would be involved and whether my experiences would be still valid, although, I guess the harrowing experience of PP itself doesn't change. I feel like I've come full circle!

[Ellie_at_APP Partner]

Hi Vee I didn't mean to put you under pressure re volunteering! I just thought from your post that it sounds like it may be something you would be interested in, if it felt right. Honestly no pressure at all!! It's great you've joined APP and got in touch with Mia. And it's definitely good to think of the other commitments in your life. We all most definitely need to look after ourselves and just do what feels right, at different times. What is great is I just try and do what I can and APP are just very grateful for whatever you manage to do - I have found there isn't big pressure at all to do a lot, anything is good.

Regional rep is just raising awareness in whatever way you can, and whatever you can manage, in your local area. The main thing I have done really is to talk at a training day for my local perinatal mental health team, I haven't managed to do much else as I am so limited with time with work and with my family etc. And definitely I don't think the fact you had PP a while ago affects anything at all! I find hearing your experience really helpful and insightful.

Take care Vee, it's so good to have you on here!

[Vee82]

Hi Sunny&wild, good to hear from you and yes, definitely something I'm interested in. Seem to be making real headway with putting APP on the map, another 'action' today! Just happened to be in the right place at the right time. I think I'd had better see if we have a Regional Rep in my locality already. Thanks again. Vee.

[Lilybeth Volunteer]

Hello jofo5245

Welcome to the forum. I'm sorry to hear your mother is still suffering severe psychosis, which you believe was caused by PP, due to misdiagnosis when you were born. As you have probably read, my first psychosis was forty years ago but thankfully I was diagnosed and had the relevant treatment available in those days.

I am sorry the 'loss' of your mother must be hard but when the psychosis takes over it is very difficult to fight. It is so sad that through no fault of her own your mother has missed so much with you. I'm sure her love for you has always been there since the day you were born but under the 'influence' of psychosis it is hard to convey.

Please keep writing here if it helps you.