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Defining Ourselves: Ill Health and Labels

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I had an interesting conversation with someone the other day, about how illness can define us. It got me thinking about my own up-and-down mental health, and how it has shaped my life over the years. It also got me thinking about my dad.

My dad has Alzheimer’s, or Alzheimer’s type dementia, according to the lovely psychiatrist who interpreted the results of his brain scan for us. We sort of expected this, having lived with his failing memory and, at that particular time, his increasing confusion and anxious phone calls about everyday things. In a way it was a relief, for the family if not for him, to have a label to pin on his difficulties. It also felt strangely validating – evidence that he actually needed the interventions and support we were providing. Similarly, when my mum became paranoid and aggressive and accused us, her daughters, of plotting against her, the doctor’s verdict of vascular dementia gave shape to our experiences with her.

The trouble with all this is that it is all too easy to let a diagnosis or label affect our expectations and our view of someone, and that includes ourselves. My mental health was very erratic in my teens and early twenties, with big, unpredictable, plunges into depression. At first I wanted labels – a diagnosis or some type of biological cause to explain it – and I went through a whole raft of medications and hospital tests. Perhaps the most useful thing to come out of all of this was the verdict that my high intelligence was a counter to my depressive tendencies, and that I needed to have a stimulating occupation to engage me. I had almost written off the idea that I could cope with work or study.

As I’ve moved on with my life, I’ve always seen myself as someone with ‘mental health problems’, even when I’ve been well and stable for many years. It helps me plan my life to avoid the biggest risks to my health – I work part-time and have learnt how to balance my space and busyness. The conversation about feeling defined by illness made me reassess my view. We all have ups and downs, and I have had many difficult circumstances to deal with in my life, so why do I feel I need this label so much? Has it become a safety net that simply confirms to me I am not worthy of all sorts of things – from a partner in my life to common respect from other people when I struggle with something? I am more than this, and wholeness is important.

With my dad, too, I sometimes wonder at the diagnosis we have been given. Statistically, many people with ‘dementia’ turn out, after death, not to have the brain chemistry to support their diagnosis. Once dad’s bladder cancer was treated his confusion settled down, and although his short-term memory is non-existent, he functions very well with help and support and enjoys a busy social life. The other possibility of course is that the Donepezil/Aricept medication he has been given for his condition is doing a good job. Either way, he can’t seem to put his brain into gear about how to heat up a ready meal, but is very perceptive and involved when discussing ideas and events that strike a chord with him.

So dad’s behaviour and progression is not typical of others I know with dementia (if there is such a thing as typical in any case). And this is the exact problem I am discussing: labels, or a particular diagnosis of illness, can result in us ending up being defined by them. I expect dad to behave or develop in a certain way because of his diagnosis, and when it doesn’t happen I feel that my expectations have short-changed him.

So how about me? On reflection, I have decided that I do not want to be defined. In fact, I like the idea of being ‘undefineable’! But if I absolutely had to be, here are some of the things I hope would be considered to be part of ‘me’:

• God in me and loved by God
• Creative
• A thinker
• Complex but compassionate
• Hopeful for this world despite all its problems
• Bouncing back
• Allowing time to be a healer
• Trying to do my part.

© Anne de Gruchy

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