Suzanne has been involved in the work of the Social Care Workforce Research Unit at King’s College London for many years, as a researcher and now as an ‘expert by experience’. She reflects on the integration of the medical versus social models of disability and the sense of dis(ease) which can follow the realisation that this has yet to materialise as a coherent practice.
Over two years ago I joined the ranks of those diagnosed with bipolar mixed affective disorder. I didn’t understand what it meant then in real terms and I am not sure I am much the wiser now. I had assumed it meant what the older term, manic-depressive, conveys quite cogently. I would have highs (which sounded like they might well be fun) and lows (which would not be!). I didn’t realise the significance of the word ‘mixed.’ I have highs and lows all at once and they can cycle very rapidly: sometimes over a few days, sometimes every few hours and—if it’s really bad—fluxing every few minutes. The character of the ups and downs are not what I expected either. The highs are not fun, just periods of great mental agitation when I obsess and worry about things. My head gets busier and busier. The lows are what you might expect—only worse. I feel depressed, sometimes become very tearful and often get overwhelmed by angst. In short: no peace at all.
There is a certain irony here. I had studied mental disorder and Bi-Polar prior to my illness, and worked with many people who had similar mental health problems. I realise now that I had little insight into their ‘lived experience’. I now know too well how hard it is to capture in words and images what such realities feel like. Normal language isn’t designed to accommodate these shady extremes of intensity.
What’s more nothing prepared me for the differences between the medical and social models as regards the ‘lived experience’. I expected that my treatment would be an integrated programme of medication and therapy, but that is not what the NHS offers. I have a committed psychiatrist who is determined to find me the right mix of medication, but it is an inexact science and takes time. I am very fortunate to receive counselling from Mind. The counsellor’s person-centred approach and my Community Health Team care co-ordinator’s style of reflective therapy gives me hope for the future.
So, exactly what have I experienced? I have lived the past two years on a cocktail of drugs some of which are potentially toxic and none of which has solved the problem or enabled me to regain equilibrium in my home or working life. I moved from being a sociable, glass half-full person to one for whom life is half-empty and being told by the doctors that my agitation was the high. I long to have the high that gives great elation—but that doesn’t come my way. Instead I have felt in limbo, argumentative with my family, not living life but existing in a swamp of sorrow or anxiety most of the time.
The medication path is fraught with difficulties. Are my symptoms an expression of the illness or side effects of the drugs? It is not easy to tell. My current medication is not stable at present as I am going through another titration. My psychiatrist sees a lot of me but I have a nagging instinct that if an integrated approach was truly followed I would be able to come off the drugs. Medication alone cannot be the solution or the answer to the symptoms. It provides a platform that should stabilise effects—but a lot else is needed. Is my lived experience the same as others out there?