My PP story: from non-diagnosis to mi... - Action on Postpar...

Action on Postpartum Psychosis
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My PP story: from non-diagnosis to misdiagnosis to diagnosis to ongoing recovery.

AnneMR33
AnneMR33

I am so glad I found this website. It's been really good reading other women's stories and realise you're not alone. I thought I should share my story. This is a story about what happens when PP is NOT diagnosed, misdiagnosed and then diagnosed far too late.

I had PP following the birth of my daughter in 2011 but unfortunately, I was not diagnosed for 4 and half months. I had no history of mental illness. When my baby was only 10 days old, I did go to a M&B Unit for a few days after hitting my then-partner but was discharged because it was believed my angry outburst had been "situational" (he had been verbally abusive), therefore due to relationship difficulties and not a consequence of mental illness.

I subsequently left my ex partner's home with my baby when she was only 5 weeks old in really difficult circumstances. The police, social services and the Health Visitor were all involved and my daughter and I were rehomed. It was a very confusing and distressing time and I remember telling services that perhaps I should go back to the M&B Unit as I was very shaken and felt I was "losing my mind". The break-up with my ex was very acrimonious and I became convinced he wanted to hurt me and our baby. I started getting "flash backs" of various things he may have done to her while we were still living together and was terrified. I became fixated with the idea of protecting my daughter against her father and saw my struggle to do this as battle of a good vs. evil. As I wouldn't let him see her, he took me to court for visiting rights.

A week before the hearing was due, my solicitor informed me I did not have enough going on against my ex partner to justify the supervised access I was pushing for. That was the tipping point. The fragile reality I had reconstructed over the last 3 months just collapsed, the world ceased to make sense and I started feeling suicidal. When asked what would become of my baby if I commited suicide, I replied I would take her with me. In my psychotic mind, this was the only way I could protect her from her evil father.

Because I had voiced infanticidal ideas, my daughter and I were separated and I was taken to an acute ward in a general psychiatric hospital. By then, I was seeing and hearing things and became convinced I was there because I had superpowers and a special purpose, although that purpose changed from one hour to the next: world peace, a cure for bipolar disorder, the dismantling of a paedophile ring, a biblical prophecy, a military experiment ordered by the Queen... The TV, newspapers and magazines were all sending me messages about these "missions". The other inpatients - all women - also had a role to play in these missions. One inpatient gave me a bible and a picture of the Queen and treated me like I was the "chosen one". At first I started looking for my daughter on the ward and when I couldn't find her, I rationalised she could not be with me as I was in there for my own protection. Soon, "they" would come and get me and reunite me with her. We would be flown to a super high security island in the middle of the ocean where we would live happily ever after. On one of her visits, one of my friends asked for a list of my closest friends (to get in touch with them via facebook). I took that to mean all the people who mattered to me would also join us on that island.

A social worker came to tell me that my daughter had been given to my ex partner, I did not believe her. The court hearing came. I was not allowed to go and temporary custody was granted to my ex. I was told but I did not register. Instead, I threw away the court hearing papers I was given and fired my solicitor on the phone.

Then amazingly, despite my sleepless, erratic and strange behaviour and despite my friends' concerns that I was clearly not myself (concerns they had voiced to staff), I was diagnosed with "a personality disorder" after 6 days and told to pack my bags and go. I imagined angry crowds were waiting for me outside and did not want to leave. I stood in my room with my back pushing against the door to prevent staff from getting in as they shouted I needed to pack and go home. When a social worker rang me on my mobile, I demanded diplomatic immunity and my baby back "and it better be the right baby!". When my dad rang me, I told him I wanted all the voices to shut up, I had the squeaky toy Sophie the giraffe in my hand and threatened to squeeze her "we all know what that means in the Wendy house". The voices gasped and were quiet for a while. By then, my family, who live abroad, were understandably very worried.

Meanwhile my best friend was at the end of her tether trying to speak to someone on the ward about my discharge. A very close friend of mine - who is a GP - had already spoken to a nurse, saying that in the 11 years she had known me, she had never seen me like this. Nobody listened. Eventually, my best friend gave up, because in her own words, "noone seemed to give a shit", she packed my bags (I was incapable at that point) and took me home where I got much much worse. Within hours I became convinced there were microphones in the flat, I had been watched and followed all along, I had pissed off some pretty important people and the building we were in was going to be knocked down with us still in it.

Because of the way I had been treated in hospital, my best friend did not want me to go back there but at the same time, she could not look after me for ever. She arranged for me to fly home to my mother's. I did as I was told when she got me to phone my family to let them know I was coming. In my mind, I was actually joining them on the remote island where they would be waiting for me along with my deceased relatives (I had heard my dead great grand dad on the phone). At the airport, my friend got staff to take me though security and to my boarding gate. By then, I thought I was being deported for having caused a war between the UK and my home country. I somehow managed to get on the plane and upon landing, squeezed Sophie the giraffe 3 times to ensure we wouldn't crash.

I also somehow got off the plane and went through border control. I did not go to baggage reclaim and wandered aimlessly in the terminal. My mother eventually found me and got my suitcase. When she did, I opened it to see if my baby was in it. The journey home was terrifying. The capital city which I knew well and had traveled through so many times had become completely alien. The country was at war because of me and people stared angrily at me for that reason. I had been stripped off my home nationality as well as my British nationality. I had become stateless, an enemy of both states and I hid my face in my mother's shawl in shame. At the train station, I became aware we were heading East and automatically assumed we were going to concentration camps. When we did get on the train, I was sure the man in front of us was from the Gestapo and would turn round and shoot us. When he didn't, I started thinking he was a priest about to "exorcise" me. I could feel the devil trying to escape through my spine.

At my mum's house, my delusions and hallucinations were less horrific but just as strong. I had brought on world peace, my youngest brother had become "the chosen one" and I was to become a saint. Colours and objects all had special powers and meanings. My mum was scared of taking me to hospital straight away in case I stayed there forever so she got her friend, a doctor, to prescribe some anxiolitics and sleeping tablets. Three days later, my mum took me to A&E and the psychiatrist there diagnosed me with PP. I stayed in hospital for 3 weeks and thanks to antipsychotic medication, I got a lot better, quickly. I got discharged and returned to the UK with my grandmother to face the total collapse of my life.

In my absence, the social flat my daughter and I had been rehomed in had been emptied of my belongings, some of them I managed to retrieve, some of them were lost or destroyed for ever. My grandmother and I had to move in a friend's empty flat. A second hearing had granted my ex partner complete and permanent custody of my daughter. I had no visiting rights and social services would only allow me to see her if I was supervised. Having fired my solicitor, I had no legal representation. Social services were convinced I had a personality disorder and the M&B Unit I had gone to in the early days had allegedly found this diagnosis "probable". I registered with a new GP and was promptly seen by a community psychiatrist who, upon reading my notes, agreed with my home psychiatrist that I had had an episode of PP. He and my CPN could not believe the psychiatrist from the general hospital had got the diagnosis so wrong.

Although I was much better and no longer psychotic, the situation was just too difficult and I became so low that I attempted suicide twice. On the second occasion, my father came to get me to take me home. There, I stayed in hospital for severe depression for 3 months and then attended a day hospital for another 3 months. Being so far away from my daughter was excruciating. For months, I only saw her occasionally on Skype. Then when I was well enough to travel, I flew over a few times to see her for a couple of hours with the social worker. Eventually, I was discharged from the day hospital and decided to move back to the UK to be closer to my daughter. By then, she was almost one. Social services had decided to no longer be involved as long as my ex partner made his own arrangement for supervised access. Which he did. This meant I could only see my daughter for 2 hours, once a month, supervised by him and his mother in a public place. The first few months of being back in the UK were very difficult. It was torture to know that my daughter was out there, in nursery, being looked after by strangers while I could not see her. I had to find accommodation close to the community psychiatrist who had correctly diagnosed me to be in the right catchment area. I then had to wait to be refered by the GP.

I had to rebuild my life slowly but surely, thanks to my GP, my psychiatrist, my CPN and my support worker from the community mental health team. I found a part time job and got myself a dog. Eventually, access to my daughter improved. After reading the community psychiatrist's report (which clearly states the first psychiatrist made a mistake), my ex allowed me to see my daughter for 2 hours once a week, still supervised. After speaking to the community psychiatrist face to face, he allowed me to have her one day a week, on my own this time. I now have her two days a week and hope for overnight stays soon. I love my baby with all my heart but I am worried that the time we spent - and continue to spend - apart will have an impact on our relationship. Having worked as a nanny, I know it is possible to bond with children even if you've not been there from the beginning. Still, I feel really sad and angry that I missed out so much on early motherhood.

I don't think it's an exagerration to say that not getting the right diagnosis for PP ruined my life. 21 months after getting the first symptoms, I am still not back to my former self and I doubt I ever will be. I am no longer on antipsychotic drugs but am still on antidepressants. Regaining a sense of self-worth as a person in general and as a mother in particular has been very very hard and I am still coming to terms with what happened to me. Teasing out the truth from the psychotic fiction about my ex partner and our relationship has also been quite difficult. Would we have broken up had I not been ill? Probably. Obviously he was nowhere near as evil as I made him out to be - he doesn't prevent me from seeing my daughter when he could, theoritically - but I also know for a fact that he was not particularly nice either. It doesn't make things easier.

With the help of the CAB and a mental health advocacy worker, I sent a letter of complaint to the NHS a few weeks ago regarding the misdiagnosis of personality disorder. In the letter, I ask for an explanation, an apology and a retraction from the consultant psychiatrist who misdiagnosed me. They've replied to me and said they'd investigated my complaint. My advocacy worker and I now have a meeting tomorrow with the psychiatrist in question as well the chief clinician. It is going to be very interesting to hear what they have to say. At the same time, it is going to be nerve-wracking to come face to face with the professional whose mistake had a huge impact on my life. Hopefully our questions will be answered and our requests granted. If anyone is interested in how the meeting went, I can update you on here.

Thanks for reading.

13 Replies
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Wow, we've all been through a lot on this forum but your journey has been particularly hard. I'm so sorry about and actually quite angry with your dreadful misdiagnosis. I think that person should be made to give you a public apology. My pp was diagnosed really fast and went away fairly quickly after taking the right drugs. It is appalling that you had to suffer for so much longer than you needed to and had your access to your child taken away. I can't imagine how terrible that must have been/is.

One thing I really wanted to say to you is not to give up hope of ever getting back to your former self. It took me at least 12 months to work my way out of the depression that followed my brief period of PPP (and i foresee ill be taking antidepressants for a while yet) and I didn't have half as much s@it to deal with as you. In some ways you are grieving the loss of your child, though thank goodness she is still around. This is a huge thing for anyone to cope with even without depression to make things so much harder.

You sound like you are very bravely fighting to get back as much normality as possible. Don't give up!

Id love to know how things turn out and i hope you are able to greatly increase the time you spend with your daughter. Jen

Hi Jen! Thanks for your kind words. The meeting was... interesting, see below.

KatG
KatGVolunteer

Thanks for sharing your story- what an awful time you have had and such agony to have been separated from your baby. I was lucky that my pp was diagnosed quickly, and I received appropriate care from the start. I really hope your access improves and you can bond with your little one. Onwards and upwards!!

AnneMR33
AnneMR33
in reply to KatG

Thank you Kat :)

Ellie_at_APP
Ellie_at_APPAdministrator

Hi I just wanted to say similar to the others, thanks so much for sharing your story, I was shocked to read it - that you could have been treated like that, misdiagnosed, lost access to your baby, its horrifying. Your experience is so important, so that other women don't go through what you have gone through. I'm amazed by your strength, determination, courage. Like the others I was diagnosed quickly, and got the most amazing care and support, and it was still traumatic, scary, the most difficult time of my life, I just can't imagine everything you have been through. I hope that you will get increased access to your baby, and also that the meeting with the psychiatrist who misdiagnosed you was somehow helpful - it would be interesting to hear how things go so please update if you feel able to, you're amazingly brave to meet him etc. its great you have an advocate now.

I hope also you will get some support on here, maybe from people who have been through similar experience to you, misdiagnosed, not allowed access etc.

Take care and I will be thinking of you

Hi Sunny and Wild, thank you. To see how the meeting went, scroll down. I gave a short account last night and a more detailed one tonight. Be prepared for more shocks :/

You're amazing! Well done for sticking at it, it takes so much guts. Like you I was misdiagnosed early on and the stigma sticks unfortunately but I know in my head what happened. I'm so glad you're seeing your daughter again, I too had an extended time away from my daughter...she's two and a half now and I think the bond just grows with you. This is what makes me feel so passionately about PP...yes it isn't particularly common but the consequences of it not being detected are just so disastrous and it's always the family left picking up the pieces. Where are your family from, I'm a skim reader so I might have missed it! All the best though and stick at it.

Vix

AnneMR33
AnneMR33
in reply to vix28

Hi Vix, thank you for your kind words. What did they diagnose you as initially? I would be interested to know. You're not a skim reader, I purposefully avoided to mention my home country. Let's say it's on the Continent ;-); If you wanna know how the meeting went, see below.

Thank you for reading my story and all your encouraging comments. Unfortunately, the meeting with the initial psychiatrist and the chief clinician did not go as well as expected. They are refusing responsibility saying that at the time, the diagnosis of personality disorder was the best working diagnosis they could come up with.

I am very unhappy about this and both my advocacy worker and I have decided we are going to take the whole thing further. We know we have a pretty strong case. But it's going to take a while before it has any impact on my access to my little girl. I will update when I have calmed down, thought this through properly and have more info. Thanks again for reading, I'm so relieved I'm not the only one to have suffered from this illness.

Hello again! I thought I would give a more detailed account of yesterday's meeting now that I've had time to process what was said.

The chief clinican started the meeting by saing that actually, the diagnosis of personality disorder predates my time at the general psychiatric hospital and goes back to the time when I was at the M&B unit. He was basically shifting the blame on the other hospital and he was taken aback when I replied I actually had my notes from there and had read them and nowhere does it say I have a personality disorder. I then quoted the general psychiatric hospital's own discharge summary which clearly states I was discharged from the M&B Unit with the diagnoses "1. situational crisis. 2. no evidence of mental illness".

So, basically, a lie. Not a good start. Strangely enough, from that point on, there was no more mention of the M&B Unit and their so-called personality disorder diagnosis.

They didn't actually give us a logical explanation for the personality disorder diagnosis, no list of criteria I had somehow met. Instead, the psychiatrist kept going back to the context of my deteriorating relationship with my ex and my little girl's welfare. She said they had no evidence that I had delusions and hallucinations. When I pointed out that I did have them, she said "But you never expressed that" and then went on saying they did their very best to look for signs of psychosis.

Conveniently, there is no record of my GP friend's half-an-hour conversation with one of the nurses. In fact, there is nothing in my file after the notes from the final review which happened in the morning of my dicharge (we left in the evening). So none of my behaviour that day (closing the door on staff, refusing to pack and leave, etc.) was actually recorded. Their answer when I pointed out that my best friend waited for the best part of the day that day to talk to a doctor who never came: "maybe she did, maybe she didn't".

When we asked why other psychiatrists had come up with a PP diagnosis, they replied that things had "obviously evolved" after I left the UK. When we asked why the community psychiatrist agreed with the PP diagnosis upon reading THEIR notes, she replied that he obviously had the benefit of hindsight and had selectively picked features to fit that diagnosis while the big picture they had was much more "mixed".

We pointed out the references in THEIR notes and reports about abnormal behaviour such as "tangential speech" "delusional ideas" "fits of unexplained laughter" "behaved quite oddly" "behaving slightly strangely" "disturbed sleep" "chaotic and disorganised" "on more than one occasion, laughing and crying and talking normally, all within the space of a few minutes" and my personal favourite: "At her final review before dicharge she had an odd selection of objects on a table around her including a statue of the Virgin Mary and a number of cloth animals".

The psychiatric minimised these references and went back to the "context". The only thing she conceded was there were indeed "some inconsistencies" in my behaviour when I highlighted how odd it was that I would be a loving and protective mum one day and show no interest in getting my baby back the next.

At that point, the chief clinician called the meeting to an end saying that they were not going to answer any more question as the purpose of the meeting had been to give me the rationale for their diagnosis and they had done exactly that. He went on to say that more questions would be unfair because although she was doing very well, the psychiatrist would need to "prepare" (no kidding). He then said they would write a letter summarising the points of the meeting and send it through the complaints team. He said a retraction on diagnosis would be impossible because a medical file is a legal document but they could add my complaint at the end of my notes.

I did not look at the chief clinician much, looking down on my papers and holding on to my folder for dear life but my advocacy worker said he looked quite unnerved. The psychiatrist, on the other hand, was very calm and confident.

Needless to say, we are not going to let this go. It has had too much of an impact on my life and my daughter's. I will update you when I receive the letter. Thanks for reading and all the support.

That has made me even more angry! I'm so glad you are going to carry on with the complaint. Good luck with your next steps.

Thanks for your support Jen. I am myself beyond angry but I managed not to let it show at the meeting. I was so taken aback by how they handled it that I was actually speechless. The overall impression was they probably knew we were in the right but wouldn't admit to it in case it made them liable.

We will take it as far as we can. Will need to wait to receive their letter but the next step is probably the Ombudsman. Will update you on here. Thank you again :)

Ellie_at_APP
Ellie_at_APPAdministrator

Oh my goodness, yes I feel so angry reading that on your behalf. Like you said they probably won't admit they're wrong because it will make them liable. Good luck with carrying on with the complaint, sounds like you have really good grounds, your whole description of your behaviour etc at the time sounds classic PP from my personal experience and reading other people's stories on here. And like you said their own notes about your behaviour. And yes, would be great if you could keep us updated. I don't know if professionals from APP can help advise you at all as well? Your advocate sounds really great though. Good luck.

X

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