Having a mother with schizophrenia & risks

[Beaatl]

Hello everyone! I am 34 years old and planning for my second pregnancy (I had a miscarriage with my first one at the early stage, 4 months). My mother and borther have heavy cases of schizophrenia. I've never had a psychotic episode, I am only diagnosed with general anxiety and minor depressive episodes, mostly emerging from my childhood with aggressive mother. I am terribly scared of developing PP or schizophrenia as a result of pregnancy and childbirth. Could you please advise me on the risk and how to handle the fear? My psychiatrist told me about the general guideline, that I should be monitored and my partner is also aware of the risk. Still I would love to go through pregnancy without this crippling fear.

[Lizzo30]

Hi if you haven't developed schizophrenia by 34 imo you never will

[Ellie_at_APP Partner]

Dear Beaatl,

Hello I'm Ellie, I'm the national peer support coordinator here at Action on Postpartum Psychosis, and I had PP in 2011 after the birth of my son.

It's so good you've reached out for support and with questions here around your risks and worries about becoming unwell, as your mother and brother had schizophrenia.

I am also so sorry to hear about your first pregnancy and miscarriage, I can only imagine how difficult that must have been, and I imagine it is something significant you also carry when planning your second pregnancy.

Information about the risk of PP is on our website, under frequently asked questions: app-network.org/what-is-pp/...

The risk is 3 in 100, in comparison to the risk in the general population, which is 1-2 in 1000.

Though the risk isn't that high (though much higher than the general population), it is great that you are taking positive steps with getting information, and researching what may help you to stay well, the fact you have struggled with general anxiety and minor depression does mean that you will definitely need to be mindful of your mental health of course too.

You may find this guide, if you haven't found it already, helpful. It's about planning a pregnancy if you are at risk of PP. It is mainly written for people who are at higher risk of PP (people with previous history of psychosis or bipolar diagnosis), but it may still be really helpful to read. It is free to download from our website here: app-network.org/what-is-pp/...

I also wanted to reply because I related to your post quite a bit as my own mum had schizophrenia too, and had several psychotic episodes in my childhood. I know each person's experience and situation is different, so please do just take or leave anything I write.

I have to say, my mum wasn't aggressive in my childhood, as you describe your mum, which must have been so traumatising and difficult for you to cope with as you were growing up. But I experienced my mum as quite emotionally absent for significant periods, and I also witnessed several of her psychotic episodes which was very difficult.

I too, without actually knowing, or anyone telling me, somehow felt I might be at increased risk of becoming unwell. I think I had a lot of fears generally about becoming a mum because of what had happened in my childhood, worries of becoming like my mum was.

Before I had my son I had accessed a lot of therapy to come to terms with what had happened in my childhood and to deal with some of my fears and anxieties about becoming unwell, or emotionally absent, like my mother. I don't know if you have been able to access therapy as well? I know this can be hard to access, and to go private is really expensive too.

I do think this really stood me in good stead, and really helped me to feel happy and confident going into pregnancy. I was seeing a psychotherapist through my pregnancy so had somewhere I could go to talk about my fears and anxieties.

As you know though I did become unwell after having my son, and it did come 'out of the blue' - I had no previous history of mental ill health before and it came as a big shock.

However, I really want to emphasise, that yes it was difficult, and traumatic, and upsetting, and it did take time to recover. But I did recover, and now have an amazing bond with my son, the family life I'd always longed for, and somehow so many positive things have even come out of the whole difficult experience - a job I love which doesn't feel like a job, amazing friends and inspiring people I have met who also had postpartum psychosis, are just some of many positive things to come out of the experience.

My experience was that my worst fears coming true didn't actually turn out to be as terrible and devastating as I thought they would be.

And I am also very aware that my experience of ill health was completely different from my mum's, as yours will be from your mother's if you did ever become unwell. I had one episode of psychosis, not multiple episodes like my mum had, and I have been well and not taken medication since I recovered from my postpartum episode.

We are not our mother's. We are our own people.

I have found it personally so important to acknowledge and come to terms with (to some extent, as much as I could) the issues I had struggled with from childhood, so I can separate it out, and help me to cope with it, and also I think it has helped me to be a better mum.

You are coming at all this too from a much better position than myself - full of knowledge of your increased risk, and having done research of how to stay well.

I am sorry if I have shared too much, it is hard to describe all this in a short amount of words, and like I have already said, please do just take or leave any of it. I know we all have our own story and experience, but your post did resonate with me.

Take care,

Ellie

[Lilybeth Volunteer]

Hello Beaatl

Thanks for reaching out and sharing your experience. I’m so sorry to hear of your loss in your first pregnancy. I don’t have any experience to share about schizophrenia but had psychosis twice many years ago, shortly after my sons were born, six years apart.

I can understand your fear. Perhaps the PP Insider Guide “Planning pregnancy : A Guide for women at high risk of Postpartum Psychosis” at app-network.org/what-is-pp/... might be helpful? On that page there are also frequently asked questions for guidance.

Take good care of yourself. I’m sorry I wasn’t able to be of more help. Wishing you well for the future.

[Maria_at_APP Moderator]

Hi Beaatl,

I think it is such a positive thing that you are reaching out and asking for information about the risks of pp to you and how to manage the uncertainty. I am really sorry to hear about your previous miscarriage, I can't imagine how hard that must have been.

I had pp in 2018 and for me it came out of the blue, I had had 2 previous depressive episodes in my life but nothing that required me going as an impatient and it was treated at home with some medication and changes in life style. For me I went into my pregnancy aware that I was at a higher risk of post-natal depression, however I had never heard of postpartum psychosis before, so it completely blindsided me when it struck as my symptoms were so different to depression. On hindsight I do believe my mum suffered from pp with her first baby, sadly she lived in a country and time when mental health was a taboo subject, and she was treated by her sister who was a psychologist in private. She always thought she had had pnd, however the onset of her symptoms was very early and it included delusions, hallucinations combined with some high and low mood, which for me paints more a picture of pp.

I can understand the trepidation you feel at the moment when thinking of planning your second pregnancy. It is extra considerations to take into account, and I wish that the decision could be more straightforward. However, I think Ellie does an excellent job in the post above to point out the risk of pp occurring when you have a close family member which has experienced psychosis. And I would like to add that the risk in paper is measured before any preventative measures are put in place. Gathering information, keeping a lookout for early warning signs, having good professional support for your mental health through your pregnancy and post-natal period, having support at home after baby arrives to protect your sleep, are all measures that may help reduce the chances of pp happening.

As I write this to you I am expecting my second baby, it took us some time to arrive to this decision given that my history puts me at high risk of pp. And I know of other mums in this forum who also went on to have other children, so the possibility of family life, either it being your first or subsequent baby, is always on the table.

The resources on the app website that both Ellie and Lilybeth mention are excellent, the guide has been compiled with the help of mums so they offer the perspective of someone in your position.

Take good care of yourself and wishing you all the best.