I do often wonder how long I had schizoaffective disorder before my diagnosis, but I guess I will never know. Back in 2016, I had my first experience of displaying symptoms of Schizophrenia (such as delusions), when I suffered from my first psychotic episode.
Before that, I had not really heard of any of these medical terms. I used to wrongly associate schizophrenic people with characters from the film ‘One Flew Over the Cuckoo’s Nest’. I thought they were lost causes who needed constant care, I didn’t think they could be functioning members of society like everyone else, and I feel bad that I used to think that. But I had a lack of education and personal experience.
In late 2019, I suffered from a relapse and had another experience with psychosis (which can be defined as losing touch with reality with delusions and/or hallucinations).. In early 2020 I was finally diagnosed with Schizoaffective Disorder. For those who are unsure, this condition is where symptoms of both psychotic and mood disorders are present together during one episode. ‘Schizo‘ refers to psychotic symptoms and ‘affective’ refers to mood symptoms. It is often described as a cross between Bipolar Disorder and Schizophrenia, as it includes symptoms from both of those conditions.
For me, it is currently something I am able to keep at bay, mainly thanks to my medication but also through being self-aware and looking after my mental wellbeing. I take Quetiapine (200mg slow release) every single day and I am more than happy with that. I have my tablet in the evening, which then helps me fall asleep without much struggle.
Without my meds, I can tell you now that I would be in all sorts of trouble. Every now and then I might forget to take it until just before bed, which means I need much longer to fall asleep because it takes a couple of hours to kick in.
That is ok though, as long as it’s not every night. But I know for a fact that without the medication, I am much more likely to start having delusions (irrational thoughts) and have an episode. Both my 2016 and 2019 episodes happened because my sleep was terrible and at times non-existent. I used to take sleep for granted, which is easy for anyone to do, but if you don’t let the brain repair itself it can lead to all sorts of problems. Just remember that psychosis can happen to absolutely anyone, I would not wish it on my worst enemy.
I am learning new things about my Schizoaffective Disorder all the time. I have joined a few Facebook groups which are supportive communities full of people with (or supporting those with) the same condition, such as this one which has nearly 18k members. For example I discovered through this group that some people who take meds before dinner (e.g. 4/5pm), find themselves waking up around 3am when they’ve worn off. They realised taking them an hour or so after dinner can give them a better sleep.
I have read books by authors with mental illness and they really help normalise it and give me peace of mind. I recently read ‘The Stranger on the Bridge’ by Jonny Benjamin (who is also Schizoaffective) and this gave me so much comfort. When you read a story that has parallels to yours, it gives you so much more hope and confidence that you can overcome your own adversities. Podcasts are a great source of help too and there are plenty out there that cover all kinds of mental illnesses.
I am also fortunate that my job gives me more opportunities to enhance my understanding of the disorder. I am proud to work for Hertfordshire Mind Network (my local mental health charity) as Fundraising & Marketing Officer, who are really supportive and always ask if there is anything they can do to help with my condition. I would advise anyone with mental illness to make your employer aware, because that’s the first step to them being able to support you and make any adjustments you might need.
I think ever since I changed my attitude to being schizoaffective, I have been able to befriend it and realise it’s not my enemy, but part of who I am. I used to feel embarrassed and was maybe even in denial at first. When I had the shame, I was never in the right mindset to go out and learn what this illness actually is, what is it doing to me, what should I look out for, what are my triggers/warning signs, what help can I get from other people.
The reality is – millions of people are schizoaffective and they are some of the best people you can encounter. They are incredible for living through it every day and I am proud to be one of them.
I hope you found my post useful and big thank you to the wonderful Eleanor Segall for the opportunity to contribute to her fantastic blog! If you’d like to connect over mental health you can find me here –
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