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The SANE Blog

‘Discover More’: The REAL reasons living with ‘schizophrenia’ is so challenging

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Person from shoulders up with long blond hair smiling at camera. They are outside and there are trees in the background.

I thrive with my ‘diagnosis of schizophrenia’ but there are still challenges for me that I feel aren’t well understood by others.

So, what are the REAL reasons that my life with ‘a diagnosis of schizophrenia’ is so challenging?

Reason 1: the voices are disruptive, but not distressing

You might be surprised that distress from hearing voices is not one of my main challenges, especially as I’ve gone for long periods without hearing voices – up to seven years at one point – and also as my more regular voice-hearing began during some distress. If I’d not endured that crisis, I may never have heard voices.

The challenge is more so the effort it takes to deal with auditory hallucinations, especially at work, which requires putting in place a well-developed personal strategy.

Hearing auditory hallucinations at work can be annoying, frustrating and exhausting, especially if this occurs on a day that I’m perhaps in a governance meeting, teaching, creating a document, being interviewed, chairing a meeting or facilitating a group.

To help, I’ve evolved my understanding and acceptance of voice-hearing over a period of academic, professional and personal learning. I’m a person of alternative mental wellbeing perspectives, and due to my understanding of voice-hearing, it doesn’t cause me consistent ‘unwellness’.

My roles require the ability to speak clearly, sometimes for long periods and require clear focus on matters being discussed and decisions being considered amongst political, personal, social, and legal parameters. My work requires consideration of robust documents, effective review, and document creation.

My career places me in emotional situations. I must work within my own discomfort zones and within the challenging arenas of other people’s mental landscapes in the learning and advocacy space.

It’s difficult to accomplish this whilst experiencing noise and chatter that no one else can hear.

Relentless sounds that I can’t switch off. The distractions don’t stop me, they can simply make what I must achieve twice as hard compared to periods when I’m not hearing noises.

Self-management of auditory hallucinations can use almost every energy resource I have. I don’t struggle because auditory hallucinations confuse, scare or distress me. I struggle because I must consistently use some form of powerful higher mental functioning to concentrate and get things done. It can be exhausting at every level. 

Reason 2: Other people’s low expectations of me

The second reason my life with ‘a diagnosis of schizophrenia’ is so challenging concerns the low standard that society has set for me. This comes up in my interactions with the general public and in my government roles. Executives often seem to believe that when working with a lived experience advisor, our skills are confined to providing a service-user perspective, advocating and understanding executive level meetings and governance.

They can forget we’re people with further backgrounds unrelated to our ‘diagnosis.’ In fact we often have several other professional skills and educational backgrounds, as well as some superior knowledge and expertise in the mental health field.

These experiences have forced me to search harder for belief and support.

It’s forced me to work harder to display that I too, like many passionate professionals, am an overachiever. I often exceed expectations simply to make a point.

It gets tiring having to deal with the surprise that I’ve accomplished something that is simply expected of others. Yes, I’ve an extensive knowledge base, skills, expertise, multiple strength areas and roles. I’m the same kind of professional as another person.

Some of my achievements aren’t remarkable because I have ‘schizophrenia’. They’re remarkable in their own right. I’m not ‘schizophrenia’ nor a ‘schizophrenic’. I’m just doing what people do.

Sympathy isn’t required and condescension is an unkindness that doesn’t go unnoticed. It makes life hard, not being recognised in the way I’d like.

Sometimes my attributes are a positive result of ‘schizophrenia’, sometimes my achievements are despite having ‘schizophrenia’, and sometimes my success is unrelated to ‘schizophrenia’.

‘Schizophrenia’ can be an irrelevant part of me or anything in my life that’s viewed as exceptional.

Reason 3: The public cling to stereotypes

Often, I receive well intentioned comments that are actually painfully frustrating and deeply offensive. Comments like: ‘But you don’t look like a schizophrenic’, ‘You’re obviously very high functioning though’, ‘But you’re not like a proper schizophrenic because of what you’re able to do’.

These comments show a lack of understanding. There’s no recognition of the normalcy of my life. I find the surprise and congratulations at my regularity to be hurtful because it reminds me of the painful reality, that society doesn’t understand me.

It’s difficult for me to pursue my dreams through all the structural barriers I experience.

must fight against oppression, prove things and work twice as hard to achieve something. This is because either the supports I need are different or mostly because I must achieve it whilst battling the distress of how I’m perceived and treated whilst I’m doing it.

Reason 4: Discrimination

The third reason I can struggle is because systemically, I’m considered a second-class citizen. This excludes me from certain equalities I’m entitled to. For example, the insurance industry withheld life insurance from me due to my ‘diagnosis’.

After a dozen phone calls to insurers, I was rejected as 'uninsurable'. This gives me the message my life isn’t worth insuring. I was made to feel subhuman and that my money is tainted. It’s as though my family deserve nothing when I die. My innocent little boy is at risk of receiving absolutely no financial protection, because his mother is viewed as ‘crazy’. If I died in a car crash tomorrow, my husband and son could be homeless. We pass on injustice and trauma.

Although I work, can afford life insurance and I’ve the good sense to want a policy, I’m denied what other parents get. After some time, I did get a policy, but of course I pay more than a ‘normal’ person, so I feel further financially punished for my emotional life challenges.

Intolerable socio-political experiences are what causes my distress.

It confines me to a status that I don’t deserve. It’s not just me, it’s not a ‘mental illness’, it’s not mine, it’s in the world around me, it’s a social sickness I’m trapped within.

There’s countless more examples of why my life can be hard with an inferior social label. I encourage everyone to discover more examples of living with ‘schizophrenia’. 

Written by Phoebe Kingston: Wife, mother, friend, professional, chocolate fiend, activist, a lover and a fighter, and a sane person.

I choose to use write clinical terminology in quotation marks due to my beliefs regarding the medical model. Although this approach works for some, the biodeterminist model and its language does not resonate with my experience.  

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