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Action on Postpartum Psychosis

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How were you treated by others when you had PP?

Survivedwithcolor profile image
15 Replies

I am looking more and more into ways to help women and survivors of PP and would like to know a little more about your stories. Here’s a question for you if you feel comfortable answering it.

How were you treated by others while you were experiencing PP? Your family, your providers, friends? If you were or are part of a religious community (any), how did they react?

I won’t be repeating your stories anywhere, but as I talk through my own experience with my therapist I’m curious about things that happened to you.

My own answer is that everyone was very confused and either didn’t understand it or didn’t believe me. Some friends were supportive. One minister of our church helped me a lot. A couple years later, another minister accused me of being possessed by demons. That was extremely upsetting.

Thankfully I am ok now, but I remember what it was like to be so misunderstood and am trying to reach back and teach people about PP. Thanks, I look forward to hearing your experience if you feel able to share it.

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Survivedwithcolor profile image
Survivedwithcolor
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15 Replies
Maria_at_APP profile image
Maria_at_APPModerator

Hi Survivedwithcolor, thank you for reaching out here and sharing your experience. It's incredible that you want to find more ways in which to help women who have been struck by this illness. It must have been so upsetting to hear those words from a minister, who should be someone called to compassion and instead he opted to say something so hurtful. I am very sorry to hear.

My very close family and friends were supportive, but there was quite some misunderstanding in the slightly larger circle. It was a very confusing time for everyone, I gather that. But some relatives assumed my stay in hospital was not related to mental illness but to an inability to cope with motherhood. It hurts me when one of my sisters in law rejects any advice from me regarding children. I have learned to ignore her attitude and I know it comes from ignorance on her part, blissful perhaps.

It's always lovely to hear from you, brave and amazing example you are for others. Take good care,

Maria

x_Amy profile image
x_AmyVolunteer

Hi Survivedwithcolor,

Firstly I would like to start by saying that I have read your heartfelt and beautiful responses to a few posts, and I feel so inspired by what you have shared here. I’m so glad you found this forum!

I am really sorry to hear that you received such hurtful comments from a minister, and so glad to hear that you are doing OK now. It is very unfortunate that PP is often still stigmatised, and I feel that the fact that the illness has (even in recent years) been somewhat criminalised in the media by certain news outlets/reporters will have had an effect on this. Spreading awareness is so important so that new mothers that experience PP can access the support that they need, and for society to have a better understanding of mental illness to be able to support them.

When I was admitted into hospital with PP, I must admit that only my husband and a couple of immediate family members knew about my diagnosis. I had never heard of PP and I was terrified about how my wider circle would react to it. When I recovered fully, and had a good understanding of my experience, I started opening up to others about the illness. I was met with mostly positive responses, however there were acquaintances and even doctors that asked questions such as “were you just not coping then?” or “so you had a meltdown?”. I was really disheartened at the time, but those experiences encouraged me to advocate for mental health, which has become a big part of my life over the years.

Thank you for sharing your experiences. Please keep in touch 💐

Best wishes, Amy xx

Survivedwithcolor profile image
Survivedwithcolor in reply tox_Amy

Thank you Amy for your comments. May I ask how long ago you experienced PP? Just wondering "recent years" meant to you.

I did know about PP and I did have PD after my first child, so it was on my radar. It just didn't follow the predicted pattern, and since I hadn't ever been psychotic in my life, I did not recognize psychosis when it started to happen. The bad thing was, no one else did either, and so it got very very severe before I got real treatment. I was actually seeing a therapist for depression and anxiety and she didn't recognize it either, because she hadn't worked with psychotic disorders before. Everyone just thought I was severely depressed, and I was able to hide the other stuff. I wasn't hospitalized until the baby quit nursing at ten months old, and with the hormone change I became full blown psychotic and couldn't hide it anymore. My family didn't believe it. They thought I had been misdiagnosed. I only told just a very few other people. Over the years I've had mixed reactions from to kindness, sympathy and interest, to disbelief, fear even blatant rejection. About six months after I was first hospitalized, there was a highly publicized incident here in the USA where a woman with PP drowned all five of her children, believing they were possessed by the devil and that was the only way to save them. Those are the stories people commonly think of, which is part of what motivates me to spread the word. I never hurt my children or considered hurting anyone else. Very few women do. But people hear the term and react with fear.

Take care XX

x_Amy profile image
x_AmyVolunteer in reply toSurvivedwithcolor

Hi Survivedwithcolor,

You’re welcome. I experienced PP in September 2014, so almost a decade ago.

Similarly to how you described, nobody picked up on my symptoms either. I experienced a traumatic birth and I think my husband was trying to process that himself, so he didn’t realise what was going on for me in the haze of looking after a newborn and all that comes with it. I remember my doctor visiting me at home just a few hours before I was admitted to hospital after reaching crisis point. She wasn’t concerned despite me telling her that I had not slept in several days, and was having distressing thoughts. Your story really resonates with me and it’s heartbreaking that we managed to hide the extent of our suffering until being admitted to psychiatric care. I also see it as a symbol of incredible strength, and a motivator to spread awareness of PP ❤️ take good care xx

Survivedwithcolor profile image
Survivedwithcolor in reply tox_Amy

Incredible strength to be sure. I’m also a cancer survivor and I have told people, cancer isn’t nearly as difficult as having PP was, or a crushing depression! I had breast cancer, and although cancer treatment was very tough and physically grueling, mentally I still had hope and a lot of support. Even if you have a terminal cancer, people rally around you in a way they don’t with mental illness. In mental illness you can’t see any way out, except to take your own life and that’s a horrible prospect.

This is part of why it’s so amazing for me to talk to survivors on this forum. We have literally been through one of the worst things life has to serve up. There are worse to be sure, such as our poor fellow humans in war areas, and those with other terminal illnesses, but when you lose your mind there isn’t anything of you left, just when you need it most for your baby and family.

Appreciate your input. xx

x_Amy profile image
x_AmyVolunteer in reply toSurvivedwithcolor

Such a poignant message. When reading your story I couldn’t help but think of the quote “difficult roads can lead to beautiful destinations”, one of yours being an example of bravery and inspiration to others on their road to recovery. Thank you so much again for sharing your experiences! xx

Cheryl-2021 profile image
Cheryl-2021Volunteer

Hello Survivedwithcolor 👋 You're amazing reaching out to this forum with the intent to help others. Very inspirational.

Unfortunately I have heard a few cases where a person with a religious background has the beliefs that is is linked to the devil. I am not in anyway justifying these views, but I don't think they necessarily do it from a hurtful perspective. It comes from their religious beliefs and lack of wanting to educate themselves around mental health. I really feel for you to have gone through this, and I am glad you now in a place to reflect and talk with others.

My experience of PP was 19 years ago and I lost a few close friends due to the lack of understanding. Referring to me as "mental" and avoiding me. Some friends even thought I was never going to myself again, which I found very upsetting. I now surround myself with people that have a good understanding of mental health and know how to support people going through difficult times. Certainly improved my friendship circle.

Cheryl xx

Irishgirl1710 profile image
Irishgirl1710Volunteer

Hello Survivedwithcolor

I experienced PP almost 5 years ago (2019). I received wonderful support from my family and health care team. I've been a Christian since I was a teenager, so I was keen for my church to know. I didn't know how they would react to my diagnosis but they were incredible. It is so unfortunate that you experienced a negative response from your minister and I'm very sorry this ignorance was directed towards you.

All the best

Ailania

Hello! So, my partner was upset and very concerned. He could see I was very unwell and was trying to be supportive, but I was concerning him by saying a lot that I am really unwell but I know I won't hurt myself or our baby - I work in mental health si stating this felt normal for me but he does not and hearing words 'hurt' 'self' and 'baby' together repeatedly made him very concerned. But he was by me and he considered quitting his job to stay home and support me and asked me to tell him if that's needed.

My mum was very supportive but didn't realise it was psychosis and how bad it was so she tried to be helpful with advice and information I was too confused to understand. She also told me after she was scared to push me to go see the doctor as knowing me she was concerned I would refuse, kick her out and end up with less not more support. She is amazingly supportive now.

My GP who was told retrospectively sadly couldn't care less. I rebooked another appointment with a different one.

My health visitors were hugely disappointing. Cancelled appointments, information in a way I could not really process, recommendation to go to local IAPT which really is not suitable for psychosis, and no offer of extra checks on me - happy to leave me from week 2 to 7 only to reschedule that to week 9 again.

Friends very supportive, most have some experience or understanding of mental health even if not psychosis.

Hope this helps!

bluelagoon12344 profile image
bluelagoon12344

hi, my experience with PP was horrible for everyone involved but I especially understand what you said above about every seeming confused and not understanding, thinking your making it up because I experienced that myself I kept saying somethings not right for a few weeks before my mums friend noticed something wasn’t right and rang the hospital, even some of the nurses were shocked when they saw what a state id gotten into as it had been going on a few weeks before I saw any specialists/doctors and actually got the help that I needed.

I hope this helps

MotherOfBears profile image
MotherOfBears

I have found it difficult to share even with my own family (eg my parents) as I imagine that they will Google the diagnosis and then be scared. I have found it easier to share with people I am less close with, like other mums at a baby group as I am less attached.

I have found that people I have told have been quite understanding.

In terms of providers, there were a couple of nurses in my MBU who were very cold and harsh in the way they dealt with me. But probably would have been like that with any of the mums, not because of the psychosis. In general I was treated well on the way into hospital, it just took too long as had to wait for contact with the community team, then home treatment team, then A&E, which made my illness much worse I think

JosephineFay profile image
JosephineFay

I have found that once people noticed I was psychotic or I brought up my mental ill health they kept away from me and my son. To date neither my son or I have any close friends we were shunned by our community.

Teresa_K_S profile image
Teresa_K_SVolunteer

hi survived with colour,

I like your username. For myself I also found a lot of confusion. I was brought up in a church and the minister and assistant minister would visit me in hospital. I found their presence reassuring.

As for family my parents were great. They tried their hardest to learn what was happening to me so as best to support me mentally and practically. My in laws though we’re different. They don’t understand mental health. I remember being hurt by a comment my mum in law made when I was very low and tearful. She said to try counting my blessings.

A lot of people like work colleagues etc didn’t know what to say and so chose to not ask or talk about it.

I hope your experiences can help others too

Best Wishes

Teresa

Survivedwithcolor profile image
Survivedwithcolor in reply toTeresa_K_S

Thank you, my username is survived with color, because that is how I survived PP. I had a colored pencil set and some paints and I drew and colored, nonstop for a long time. The colors somehow connected me to reality in a way that other things didn't. They made sense to me, when nothing else did. I drew the things I was seeing and hearing and feeling, and somehow that helped. I still have the drawings and have used them to help teach other people about what it's like to be psychotic, mostly mental health professionals. They're not great art, but they served a purpose. Sometimes I think I ought to do more, but they're really not that incredible, and there's a lot of better stuff out there, so I've gotten discouraged with it. Wish there were more time in the day.

Teresa_K_S profile image
Teresa_K_SVolunteer

Hi Survivedwithcolor

how lovely that colour and art helped you through. When I was in hospital my mother in law gave me some coloured pencils and an adult colouring book with William Morris designs. Even just the simple act colouring in a printed picture was soothing.

How great that you can share your art annd experience to help others understand psychosis.

I appreciate finding time in a day to achieve more is hard. I find it hard to leave time for things I would like to do. Often people using evenings to be creative but I find after 7pm I am just shattered and lucky if I have energy to make it into the shower

Take Care

Teresa x

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