Rachel’s story: I had never heard of postpartum psychosis before experiencing it – now I’m running a marathon to raise awareness

My first pregnancy was fairly straightforward – although I was incredibly anxious about something going wrong towards the end. However, after giving birth, and following my daughter’s newborn check, she was showing a few markers for Down’s Syndrome, so they decided to carry out some testing, which was a huge shock because nothing had been picked up during pregnancy.

When the results came back a few days later they confirmed that she didn’t, in fact, have Down’s Syndrome, but by that point I hadn’t slept in four days. I had been so anxious and I was convinced that if I fell asleep something bad would happen to my daughter.

While I was still on the ward I told the midwives that I didn’t feel quite right and that I was having these strange thoughts that I couldn’t make sense of, but they said I was probably just stressed and told me to try get some sleep.

After going home, however, things started to get worse. I was still unable to sleep, my thoughts were racing and I started to have delusions. One night I became convinced that I was in labour again and that I had dreamt everything up to this point. I woke my mum who had been staying to help and keep an eye on me, and my partner, James, and I said I was worried because I didn’t feel right and I wanted to go to A&E to get help.

So we went to A&E in the middle of the night and hours later I was assessed by the mental health team who thought I had heightened anxiety (which seemed reasonable given the stressful few days we had) and they were going to send me home. But while I was being assessed they realised I had a temperature, so they kept me on the ward in case I had contracted an infection.

I stayed in hospital and deteriorated a lot overnight and by the morning they realised there was more than anxiety going on. By this point I didn’t know where I was and felt trapped. I became suspicious of midwives on the ward, and even my family members visiting. I was suspected of having postpartum psychosis (PP) and they found me a bed on a Mother and Baby Unit (MBU). But because they thought I had an infection, they wanted me to stay on the ward for another few nights before being transferred as I needed IV antibiotics. Over the next night, however, I became extremely unwell. I was experiencing hallucinations and was very agitated, and it became unsafe for me to stay on a postnatal ward, so they had to section me and move me to the MBU in Leeds. I was there for six weeks.

During my first two weeks on the MBU I was convinced I was in prison and I believed I had harmed my baby. At times I even thought I had died myself. I was too unwell to care for my daughter, so it was decided that James would take her home overnight and bring her in every day to see me at first. As I started getting better week by week, I was able to have her stay with me and eventually have leave at home. I am grateful to have been able to get a bed on an MBU as even though I was unwell I was still able to be part of many of her ‘firsts’ while on the ward - her first bath and our first walk with the pram. I also continued to breastfeed when I could which helped our bond.

After returning home full time, I just wanted to put the experience behind me. I was in denial that it ever happened, and I didn’t want to talk about it. I also felt a sense of grief that so much time had passed and I’d missed out on what we pictured life with a newborn to be like. I had some APP leaflets but, at first, I didn’t reach out to anyone, and then lockdown hit.

I was quite lucky in that we had moved in with my mum before lockdown and my brother and sister were there too, so we weren’t isolated or anything and we had lots of help on hand.

But then, coming up to my daughter’s first birthday, I decided to reach out to APP. I had been reading stories on the website and the forum of people who had been through similar experiences, and I read APP ambassador, Laura Dockrill’s memoir too, and it really resonated with me. I then started joining the APP café group and, after a while, I trained as a volunteer. I was glad to finally be able to talk about my experience with people who understood, and it really helped me to get involved too.

Then we decided we wanted a second child. We knew the risks were high, but I was confident that it all happened the first time because of the stressful experience that we had. I had support from APP and the perinatal team from very early on in my second pregnancy and they helped me put a plan in place in case I did become unwell again.

The birth was great and everything seemed OK at first, but then about a week and a half later I started having similar symptoms - heightened anxiety, being unable to sleep, feeling manic and being obsessive about my newborn's safety and health. James recognised the signs and quickly helped to get me a bed on an MBU – which I went to voluntarily.

Unfortunately, I became really unwell very quickly and was sectioned again three days later. Again I thought I had harmed one of my children and I didn't trust the staff. Due to covid restrictions only James could visit at first, so I couldn't see my daughter for two weeks, and she couldn’t spend time with her new baby brother. My mum couldn't visit either which was really difficult for James, as he had our daughter to take care of at home this time too so couldn't visit us as much as the first time. Luckily the restrictions started to relax during my stay, so they could both visit after a while.

I was there for eight weeks in total, but I had my baby with me the whole time which was much better. I had the opportunity to discuss the importance of staying with my baby to the professionals during my care planning meetings. The second time was still frightening, but I knew that I was going to get better and I was able to advocate for myself more. Having the support and the knowledge made a huge difference.

After being discharged the second time, I did struggle with depression and anxiety, but I’m doing much better now and, around two years ago, I applied for a peer support role with APP and started helping to run the café groups and supporting mums on the ward, too. I’ve also shared my story for lived experience training sessions with health professionals. Getting support from APP and being able to give back too is so important to me and to James, as he also benefited from APP’s partner peer support.

That’s why we’re both training to run the London Marathon – as well as completing an 85-mile run/walk between Leeds and Chorley MBUs – the two units I was treated in.

Before I had the children I was always really active – I enjoyed running and going to the gym. After having the children I lost my love of fitness so decided to get back into it by doing the Couch to 5k programme. Running was the easiest thing to fit around family life, and I’ve built it back up from there. Running also allows me to clear my head and has had a positive impact on my mental health.

James had always wanted to take part in a challenge for APP, as he was so grateful for being able to speak to another partner for support and he said that, when he did, it was a big turning point for him. He also knows how much APP has helped me, so it was James who came up with the MBU challenge, but when we saw that APP had London marathon places, we thought we could maybe do that as well!

Having PP has been really tough, but it’s also made me a much stronger person. I think I used to have a lot of fear around challenging myself before but now I’ve been through PP I feel as though I can get through a marathon. I have met some incredibly inspiring people through APP, and their strength will be motivating me through both challenges too.

Now, I want to raise money to help APP continue to support other families but I also feel strongly about raising awareness because I had never heard of postpartum psychosis before it happened to me and having just some knowledge of it, or knowing where to find help would have made a big difference.

To sponsor Rachel and James, visit their Just Giving page here.