"I thought he was better now?"
I can't count the number of times I've heard this question over the past 20 years since my brother was diagnosed with schizophrenia. These loaded six words uncover many common misconceptions and prejudices about mental illness. Having walked alongside him on his journey, I now have a deeper understanding of the issues that underpin mental health recovery.
Here's what I've learnt.
The concept of 'better' is subjective
In the early years following my brother's diagnosis, I thought his illness was something to be beaten. To be crushed. To be squashed by medications and therapy, and that persistence was the only thing that would guarantee victory against this invisible but much hated presence in our lives. I thought for him to be 'better' he needed to tick the boxes on the 'normal' list: work, house, friends, marriage, babies. As if these were the silver bullets that psychiatry could never offer.
It is not for any doctor, or support worker, or well-intentioned friend to dictate the ingredients needed to give him meaning and purpose.
In actual fact, my obsession with him ticking those boxes was much more about me wanting to protect him from stigma and discrimination: to give him a mask from his suffering and the tickets needed for acceptance in our community. Since then, I've learnt that it is not for me to determine what 'better' means for my brother, or its timing. It is not for any doctor, or support worker, or well-intentioned friend to dictate the ingredients needed to give him meaning and purpose.
For better or for worse, his experience with mental illness is a chapter in his life and part of his identity. Like any experience that has both darkness and light, there are lessons to be learned from his experience of mental illness: for one thing, the degree of compassion and acceptance towards others he lives by is something that most people struggle to achieve in a lifetime.
Listen without judgement
We are still not yet comfortable talking about mental illness. People ask the now well promoted 'R U OK?' -- but all too often have no answer should the reply contain anything other than 'yes'. When it's someone close to us, this helplessness is even more acute given our personal investment in them being okay.
We want order and predictability. As a result, many of us lack the skills to appropriately support someone in mental health crisis. When someone is experiencing mental ill health, we have a tendency to want to 'fix' it -- inadvertently perpetuating another misconception that people who experience mental illness are in some way 'broken'. To search for meaning as to why they can't just "snap out of it", or "try harder". This is not a criticism -- it is understandable -- but it shows the need for better education and awareness.
To simply listen and sit with someone's distress is hard. It is also far more appropriate than dismissing or minimising what that person is going through. To sit, to be, to reassure and not fix, is often what is needed.
No one is to blame
For many people, relapse or deterioration in a medical condition is associated with not following doctor's orders. The inherent faith that we put in medications often means that we assume a change in the course of the illness is likely due to some failing of the individual, rather than due to other complex bio-psycho-social factors at play.
All too often it is focused simply on symptom control, rather than on picking up the pieces of someone's life following crisis.
The treatment system itself can be traumatising. All too often it is focused simply on symptom control, rather than on picking up the pieces of someone's life following crisis. We know that access to the public mental health system requires too high a level of acuity due to the continuous underinvestment in services required to meet demand. If blame need lie anywhere, it is there.
Recovery is not linear
And this is the big one.
The idea that mental illness is like a virus or a broken leg carries with it an assumption that there is a clearly defined start and end point on a set course toward resolution. Mental illness simply doesn't work like that. The fluidity of mind, mood, experience and the impact of the surrounding environment can alter our brain's biochemistry and disrupt the journey toward recovery.
My brother once said that there is nothing wrong with taking one step forward and two steps back, as long as it meant he learnt to walk again. How right he is. Although there are times when I'm tired, frightened and desperately want life to resume to normal -- whatever that is -- I can see now that walking beside him is far better than trying to force him to run before he is ready.
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