Psychiatric records

[guinea1]

This is a question that I have pondered on, has anyone got their psychiatric records, read the report when you got sent to hospital and looked at it and thought they were diagnosed on a mental point of view, not on the actual person and how they would normally think.When I went in to PPP, I had had reflexology and went into a bit of a dreamy state so started say I could see dolphins laughing and they were saying come with me..... reflexology told husband , that then relayed to the team who visited the next day, I was also saying and acting out I couldn't move my legs, which come from the epidural as they struggled to get the needle in as hardly any gape, so were saying don't move, then wiggle you toes as can get paralysed, I was in a total panic but too afraid to move.. so I must have started reliving it.. I also had breast abscess in both breasts which were really painful and red.. this was about 5 days before I became unwell with PP.. I feel I was delirious from the mastitis.. obviously this was a long time ago (29yrs) but I remember things very clearly as if yesterday .. has anyone else questioned that other things were going on. Birthtrauma, birth PTSD, I have been diagnosed in the last few years with PTSD from the trauma of the birth and hospitalisation in a general psychiatric hospital and because how I was treated.. I have only just opened up in the last 7years..

Recently they have mentioned I have autistic traits.. have always looked and felt the world in very different ways to others.. so I view things and say things so different..

[Jenny_at_APP Partner]

Hello guinea1,

I hope you’re doing ok.

I’ve not ever accessed my medical records from when I was unwell and I’m not sure if I’d want to ever read them really. I do imagine it’s very strange to read what someone else has written and decided based on what they see and observe looking on, compared to what we know and have experienced and felt from our perspective. What we experience is so real. For me, there was so much I never said and shared, so much was in my own head. There could never be a report that reflects that accurately is there, as only we really know what we went through.

I’m sorry you went through so much. My experience was nearly 12 years ago now and I too remember it so vividly.

Sending you very best wishes,

Jenny x

[guinea1 in reply to Jenny_at_APP]

I am ok, I have my therapist, the notes have been at my doctors for about 5 years I had been looking through some of them with him, I couldn't have them at home... but now I took them home to look at with the therapist and I have been able to keep them here. My gp is hopefully going to talk though the hospital admissions notes with me.. I did mention to my mental health coordinator about maybe it would be an idea to see the doctor thers.. I am only just getting ok with psychiatrist now.. there has been so much trauma around the hospitalisation, I was absolutely terrified.. thankfully I did get to a mother and baby place ment.. just me and baby there, with safe other patients and was able to bond with my daughter.. have a beautiful relationship with her. I think I need to do this with my notes as need some understanding.. I hadn't even been able to talk to family about it until now.

[Maria_at_APP Moderator]

Hi guinea1,

I have wondered about getting my notes for when I was in the general psychiatric ward 5 years ago. I believe I have some trauma associated to it, for when I my mood takes a dip I am prone to relive that experience, and sometimes I get intrusive thoughts that I never left the psychiatric hospital. I am so sorry that your experience in the psychiatric hospital left you with PTSD, it must have been so terrifying, and how that has left you mistrustful of health professionals in general. It must have been very hard, but I am glad you are getting along with your psychiatrist now.

It can be a tough read, and I think you are doing it right by reading it with your therapist, so you can digest it and talk it over in a safe space. I would not read them by myself.

Take very good care and hope that you can find the closure you seek.

Maria

[guinea1 in reply to Maria_at_APP]

Thank yo, yes it is hard reading them, each year I go through it all again from my daughter's birthday til June, so a hard time of the year... I had a pretty ok life bringing up the children, itwas when they left home.. and a very bad encounter with a normal hospital consultant that triggered the trauma to start unravelling and thankfully fully a very understanding gp, who took time to gain my trust... I have never had anyone to talk to before, as felt it was all my fault and diserve the treatment in the hospital, it was only when my gp said he was sorry about how I was treated, I began to realise none of it was my fault.. th gp supported me all the way to getting me through to accepting help from the community mental health team, so I have a care worker who attends any appointments with psychiatrist so I have a save person with me and understands how my brain works, so they don't jump to conclusions. I think it is a very good idea to look at the notes with professionals as can be very triggering and questions can be asked.

[Maria_at_APP Moderator in reply to guinea1]

Hi guinea1, you have gone through so much in your journey, it is true that sometimes the distractions of the busy family life keeps us from realising deep seated trauma that we carry. And additionally you didn't feel able to talk to anyone about it and that must have been so hard.

I am so glad you are now under the community team and for that GP who sounds so understanding and humane. It's lucky to run into professionals that have that level of care.

Do take care of yourself while you are reading your notes, it can be very upsetting especially if your care has been so poor. I'll be thinking of you.

Maria

[Survivedwithcolor]

I did get some of my notes after I had PP 20 years ago. Some of them were interesting in that I learned things they hadn’t told me or I hadn’t realized was happening. There were comments that seemed really off to me and I ended up feeling very misunderstood by some people. A couple people who commented sounded like they actively disliked working with me and even made it sound like they thought I was lying or making things up, so that was hard to read. That was during a difficult time and I realize that I wasn’t myself; I was struggling with both the illness and some pretty severe effects from all the medications. That’s all over and gone now, and I don’t think I’m that person anymore, so I don’t assign it any value. I think I’ve thrown it away and if I haven’t, I will. None of that is relevant anymore and I’m old enough that I wouldn’t want my kids reading it after I’m gone.

If your experience was 29 years ago, chances are you had a similar experience to mine in that people may not have been sure what you had or how to treat you. PP was not at all well understood then, and I question whether it is now, depending on where you live. I lived in a rural area of the USA at that time and my doctors didn’t understand it. I was misdiagnosed and treated incorrectly. If I ever recover from my present health situation I intend to do more work with PSI to help that situation in the US. I think it’s much better now, but reproductive health is a tough issue in this country and one that doesn’t receive the respect it deserves.

[guinea1]

I'm in the UK, yes they didn't understand me and I was terrified all the time whilst in the psychiatric hospital, plus treatment wasn't great.. I

[Soulbird]

Hi guinea1, I can remember things very vividly too. Mine was 8.5 years ago. I suspected there was more going on at the time than PP alone (or that there were contributing factors that the professionals didn't/weren't able to take into account).

I have also got hold of my records. Partly for closure, partly because I wanted to (and still intend) to write detailed feedback to both places that treated me. I wanted to be able to do this from a more neutral, less activated place, so that it would be taken seriously, which is why I wasn't able to do it earlier.

I see a therapist - I started with him at the end of 2017, when I came off my meds and had insomnia. The insomnia made me anxious that I'd have another (3rd) episode, so I initially went to counselling for the insomnia and anxiety, but I then starting unpicking all the other things that I could have done with going to therapy for a decade before! It has been a powerful (and empowering) journey.

I suspected during both of my episodes that there might be ADHD and/or autism present, but it was dismissed, though my mentions of it were put into my notes.

At the end of 2022, I was finally diagnosed with autism at age 38. Things make so much sense now! I have found getting the diagnosis a very positive and validating thing, though I know that it is different for everyone. I have heard that there is a link between a higher chance of psychosis if one has autism, though I have not looked more deeply into this yet. I am also on the waiting list for an ADHD assessment.

Also, I do wonder if it is more common for neurodivergent mums to have postnatal depression too. Thinking of autism, transitions can be very difficult. I found just as I got used to one baby stage, the ground would shift beneath me and everything would change. Masking was awful too and I could never talk to my daughter in a baby voice, as others seemed to do naturally. I felt I was masking on steroids for at least the first two years because I didn't know what I was "supposed" to do. But looking back, I've felt like that my whole life, only becoming a mum amplified it, because it was all so new. Lots of women are being diagnosed now because they present so differently to what we thought we knew about autism (which was based on research into the male presentation, as far as I am aware) so I think you're asking some very interesting questions. Happy to talk more about this

[guinea1 in reply to Soulbird]

Thanks for sharing this, very interesting. I have always seen the world in a different way to others, a close empathy to nature and with others..

Last year I was seeing a psychiatrist and he mentioned I have autistic traits, at first it made sense, though later I felt totally upset about it.. I feel if I got a diagnosis it would take away my identity which make me , me.. I am 58 this year , I am not sure having a diagnosis now will help, though I do want to explore my traits so I can gain some coping methods..

I really do feel back then there was other things going on, plus just being , put in a general psychiatric hospital, did me no good at all. I only started getting better once they got me and baby to the mother and baby place.. they treated me like a human being and not a mental patient.