Aaliyah

Aaliyah lives in a regional town. About 10 years ago she was diagnosed with chronic pain and cognitive disability. She says confusion and memory loss affect her daily life. There are times when even walking is painful.

Aaliyah told the Royal Commission that cognitive dysfunction is a cruel condition to live with. When too many upsetting events happening quickly and closely together, they ‘pile up’ in her head. ‘I may have an outburst of tears if I am really tired, upset or pressured.’

Medical professionals commonly refer to these outbursts as behaviours of concern, but treat the symptoms in different ways.

Aaliyah says psychologists accept her as she is, allowing her the freedom to be honest, emotional and even angry if she needs to be.

‘Anger bothers me more than any other symptoms as sometimes I feel like I am losing control and worse, sometimes I feel that I don't care if I do.’

She says in her experience, psychiatrists are quick to prescribe antipsychotics and other drugs for the same thing. Over the years various medications have produced a range of side effects from confusion and paranoia, to drastic mood changes.

She says she stopped taking one particular antipsychotic drug after it left her severely sedated and she could ‘hardly do anything for three days’.

It has taken Aaliyah years to find the right medication and dose. ‘I am very wary of taking any medications because I usually have side effects some of which are scary or cause discomfort. I have reservations even with trying a different dose.’

Aaliyah has learned to distrust psychiatrists, who have ‘mainly done one-off tests’ before prescribing. She recommends clinicians give clear information about the reason they are prescribing certain types of drugs as well as potential side effects.

‘I need to be treated more gently and considerately. The last thing I can handle in my confused insecure state is a full-on psychiatrist looking for a mental disorder and wanting to fix me with pills.’

Aaliyah has learned to use diversion techniques to calm herself, and takes time out to process situations and events. She recommends specialists offer more therapeutic options such as ‘talking to an appropriate person, exercise, sunlight, being with positive people, watching something funny, taking photos of flora and fauna and identifying them’.

She says cognitive dysfunction is a frustrating condition and even those close to her find it hard to understand what she is going through.

‘People can be very selfish and they don't like being with those who are unwell. They don't know what to say and they don't want to be asked to help or do anything which will take up time and may even cost money.’

Since her divorce about five years ago, Aaliyah has been living alone. She describes this as ‘the perfect ground for growing Depression’.

Prior to this, she lived through years of domestic violence. Her former husband – who also has a disability – would kick, hit and throw inanimate objects to intimidate and scare her. ‘His behaviour was too unhealthy for me to live with but then [that] left me living alone, with little support and depressing thoughts.’

When she was assessed for the Disability Support Pension, Aaliyah’s psychologist recommended daily face-to-face contact with people. But it has been hard to find the right support in the regional town she lives in.

‘I need the contact because of my sociable personality type as long as [it] is positive and up building,’ she says. ‘As I am easily hurt I need someone who is kind, gentle, sensitive and doesn't judge or criticise. I need to be able to vent at times if I'm upset about something.’