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My story: Managing the ups and downs

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It's not only the mood swings, delusions and hallucinations that Sarah has had to fight in her 15 year battle with schizoaffective disorder, she's also had to tackle stigma, misunderstanding and negative reactions.

She discusses how she's learnt to live with the symptoms and the public perception.

Who is Sarah?

I'm 30 years old and recently separated with two children under 10. I juggle casual work with study (I'm about to embark on my third degree) and various roles on school committees. Sometimes I'm not sure if I keep busy to avoid loneliness or actually enjoy it. I like to unwind with trashy TV.

How would you describe your mental health concerns?

I was diagnosed with schizoaffective disorder when I was a teenager. My most common symptoms were mood swings, delusions and hallucinations.

What led to your diagnosis of schizoaffective disorder?

I was lucky enough to attend a highly supportive high school, where I was encouraged to seek help when I became unwell. The 'discovery' point was probably when I began talking out loud about my hallucinations and delusions. Despite being unwell, my grades did not drop and remained higher than average.

What does your support system look like?

My support network are my amazing family and friends. One particular person that I can single out is my uncle. He has been there for me from the start and ensured that when I'm unwell, I receive the assistance I need. It's vital support people have the confidence and ability to ensure their loved one receives professional help if required, no matter how much they resist.

My support network is reliable, and I know that I can contact people within it and rely on them unconditionally.

My support network also relies on me. I need to be honest with myself, and recognise when I need professional help. It sounds corny, but if I'm not able to see when I need help, my support network falls apart. Being honest is particularly important now that I have children.

Before you were diagnosed with schizoaffective disorder, what did you know about it?

I had no idea what my diagnosis meant at first. It took me a while to receive a diagnosis and when I did I was relieved to have one. It gave me a sense of not being alone and allowed me to educate myself on therapies.

What extra information did you receive from health professionals?

I found doing my own research was important. When unwell, it was hard to focus, so I concentrated on educating myself about medication. I was keen to understand what the medication was doing to my brain. I encountered resistance from staff at the inpatient unit in obtaining this information, however, I was given it and that provided me with relief.

What's the worst myth you've encountered?

I vividly recall someone saying to me that people who are placed in an inpatient unit as a teenager will never finish high school. I know of quite a few people, myself included, where this is simply not the case.

Personally, I find having to explain what schizoaffective disorder is to be the most frustrating part of having it. I feel like people hear the word 'schizo' and automatically assume I've got schizophrenia.

I describe schizoaffective disorder as a mood disorder that has components of schizophrenia as well as mood disorders. Personally, my moods were often erratic, behaviours unpredictable, and experienced hallucinations and delusions.

Is there a symptom of schizoaffective disorder you can't forget?

One aspect I find amusing is my experience of hallucinating 'the little green man'. He was a hallucination in the form of a green man, similar to a leprechaun, and would sit on my shoulder.

I recall one time where I was sharing my experiences to a group. Behind me on the wall was a painting that looked like a green blob near my shoulder. It was pointed out to me and we all had a chuckle over it. I believe some of the room were nervous, and from then on have developed a habit of checking behind me before I speak to groups.

The aspect I appreciate most is how the experience has shaped me and made me who I am today. Without the interventions of others, I wouldn't be here.

It's a double-edged sword, both a blessing and source of frustration, knowing when I'm getting unwell again. I've worked so hard at overcoming my obstacles and trying to live a happy and balanced life, yet when my symptoms reappear, it sends me into fear and panic.

How open are you about your experiences?

I am not at all open about sharing my symptoms with others. It's ironic that I'm contributing here, as generally, I don't like to give too much away.

I've experienced a lot of stigma throughout my life, particularly in the workforce. Only once I feel it's safe for me to disclose my mental illness and I've built and developed a trustworthy rapport, will I share my story.

I will never forget one positive workplace experience. A gentleman in his 50s was working on the other side of the partition to me. We were chatting on the office online chat program at the time and he disclosed something personal to me, that he had never disclosed to anyone in the workplace before. And I did the same. I have now moved thousands of kilometres away from that workplace, but we still stay in contact. He's very dear to me, and that experience always makes me feel less afraid about disclosing.

How does it affect relationships?

When I was unwell, I lost a lot of friends. I also had family members who refused to believe it. The people that were there for me at my most unwell are now the most treasured people in my life.

It has definitely affected romantic relationships. A previous partner would always hold my mental illness against me, especially in arguments. I learnt how to disengage and didn't tell him if I was having symptoms reappear, which wasn't helpful.

How do people respond to your disclosure?

I feel like often people respond to it, initially at least, with disbelief. They are usually grateful that I have shared my experience with them. I feel like I am fortunate in that I have always had a strong and supportive network around me.

I only wish that people were able to look at mental health concerns in a more open-minded manner, and understand that a lot of people living with mental illness are able to contribute meaningfully to society, provided you give them the opportunity and ensure they have a support network. 

How do you think schizoaffective disorder has influenced your personal trajectory?

Sometimes I feel like the diagnosis was a hiccup in my personal trajectory, and yet without it, and the intensive intervention I received, I would not be here today and have the insight that I do now. My diagnosis has inspired me to reduce the stigma that surrounds mental illness more broadly.

What has it taught you?

It's taught me to be grateful for people who show me unconditional love and support. I'm thankful that the experience has also allowed me to acknowledge that I'm not perfect, and that there are always positive options, whether it's listening to my favourite music until I fall asleep or picking up the phone and seeking professional help.

A day in the life of Sarah

My day usually starts with the night before. That's because the night before I run through in my head what I have got planned, how long each task will take, where I might get a takeaway coffee, which coffee cup will I take, and more.

When I wake up, these thoughts are still running through my head. I am usually woken by my children and jump into the routine of getting them off to school.

There are days when this works really well and goes off without a hitch. My schedule goes to plan, I fit in a gym session, catch up with friends, listen to music, and if the house is ultra-lucky, it gets cleaned. On these days, I feel accomplished, dare I say happy?

Then there are other days when I struggle to get up. A low tide has kicked in. I feel miserable and grumpy. I can't be bothered doing anything, and my minimal energy barely musters a 'good morning' to the children. My phone stays on silent mode and I sit on the floor staring at the TV without really taking in the show. Eventually, I realise it's time to pick up the children. Nothing I have planned gets achieved on those days, although I remind myself that making it through the day is an achievement itself.

There are also nights when I know something's not quite right that take me back to when I was really unwell. I use my coping strategies, and how the feelings relate to an imaginary scale I've devised so that I can rate how unwell I'm getting. I schedule regular appointments with my psychologist because she once asked me, 'How will I know if you're really unwell? Will you call me?' I replied, 'I won't call you, you wouldn't know'. The regular appointments provide a safety net.

I am excited to be seeing a psychiatrist soon. It may sound bizarre, as I know it's not generally a good sign if you need to see a psychiatrist, yet I feel that I'm nowhere near as bad as I was last time I saw one. I'm comforted by the fact that I've survived a rough patch before, and can therefore do it again.

These up and down patches are probably normal for everyone, but whether it's schizoaffective disorder or just me, they seem to be getting more and more extreme.

I'd like to say that everyone's experience with mental illness is unique, and as a wise fellow inpatient once told me, 'You should never compare your experience to someone else's'. After all these years, this wisdom has really resonated with me. I try to approach people by giving them the benefit of the doubt – a smile and non-judgmental approach goes a long way!

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