Samantha’s story: I was diagnosed with schizoaffective disorder after PP - but it’s not the life sentence I thought it was going to be

I’d never experienced any real mental health problems prior to being diagnosed with postpartum psychosis. However, six years later, following another psychotic episode, I was diagnosed with schizoaffective disorder and told I’d need medication for life. But after learning how to better manage my health and wellbeing, I’ve been symptom-free for over seven years. Now, I want to inspire others by showing that, despite your diagnosis, you can go on to live a healthy and happy life.

In 2005 I gave birth for the first time. I had quite a large baby - he was nearly 10 pounds and, following a forceps delivery, I lost a lot of blood. It was a terrifying time, I had to have a blood transfusion, I hadn’t slept for three days straight before the birth and I really believed I was going to die.

Looking back, it definitely felt as though this trauma marked the beginning of my mental health problems.

After the blood transfusion I could feel that something wasn’t right. I even joked that they’d ‘given me the blood of a mad man’. They wanted me to see a psychiatrist at this point but I denied that there was anything wrong with me and they let me go home with my baby.

After getting home my family became really concerned. I trashed the house and experienced visions, so they got the mental health team involved and I ended up being sectioned.

My memories of that time are still quite hazy and I feel I have blocked a lot of it out as a protection mechanism, but some of the visions I experienced are still very vivid. I am certain I was never suicidal and I didn’t have any worrying thoughts about my baby, but things definitely weren’t right with me.

Unfortunately, there wasn’t a Mother and Baby Unit (MBU) nearby and my then husband had to make a decision for me to go into a general psychiatric ward, as I wasn’t able to articulate myself how I wanted to be treated.

My experience on the mixed ward was not a good one, and there were some awful incidents that traumatised me. I wasn’t sleeping and was continually walking around the wards apparently putting myself at risk amongst some of the unwell male patients. I remember being restrained and put in seclusion on more than one occasion. I also felt uncomfortable when there were usually just male members of staff on duty especially at night. I had already had a traumatic time giving birth and all of this just added to the distress. This would not have happened had I been sent to where I should have been – an MBU. I ended up staying on the general ward for 28 long days.

I was told that there was a 50% chance of me getting PP again if I had another baby. However, 19 months later, having given birth to my daughter, I felt more prepared.

I had a planned c-section, knew what to look out for and felt more supported. I had a mental health team keep an eye on me throughout the process but refused any type of medication. Thankfully, I didn’t experience PP following my daughter’s birth.

However, after being well for six years, I experienced a psychotic episode, which I believe was linked to the trauma and I ended up back in the psychiatric unit for 28 days again. This was in 2011 and between then and 2016 I ended up being sectioned four more times for subsequent episodes.

I was initially diagnosed with bipolar disorder and then told it was actually schizoaffective disorder which was a real shock as there is so much stigma attached to the label. My family were told that my condition was so severe I would need medication for life, which really affected me as I had always preferred a holistic approach, so I kept stopping the medication they supplied me with. Because of this they were unable to trust me and had to give me monthly injections which I also found traumatic.

My last episode was in 2016 due to a lot of stress in my life within a short period and I was hospitalised for three months. During that time my mind and body totally shut down and I couldn’t communicate with anyone. Luckily, this time, I was in a women only ward.

After this last event I was referred to an extremely good NHS psychiatrist who did not believe that everyone with this condition needed to be on medication for life. He worked with me over a long period of time and carefully weaned me off my medication so that by 2019 I was medication free. It was at this time I decided to work on healing myself and dealing with past traumas through reiki and other holistic therapies.

My experiences inspired me to want to give something back to others, and I now work full time supporting adults with learning difficulties.

Another big achievement was buying my own house in 2020 – something I never believed would be possible.

There’s a lot more to my story but for the last seven years things have been great. I have had my ups and downs like everyone else - especially during Covid and working in a care home. I have dealt with a lot during this time but have managed to stay well. I really want to express that a psychiatric diagnosis doesn’t mean you are written off and it doesn’t have to be a life sentence. I am now leading a normal and happy life and in some ways, I wouldn’t change a thing as it’s made me the strong woman I am today.