My Msc research dissertation into the experience of therapists working with clients who have Fibromyalgia (FM) came to the conclusion that for a small percentage of FM patients there may well be a psychological cause for their symptoms. More specifically, a profile developed of women 30plus, who had been brought up in a family environment where the ‘British stiff upper lip’ was the coping mechanism. During the war people weren’t supposed to complain, just be grateful for what they had, and any fears they may had were to be repressed in order to cope. This then had an impact on the children as they never truly experienced an emotional environment, and thus an emotional self.
Many of the therapists in my research came to understand the symptoms of their clients as a ‘locking in’ or ‘holding on’ of emotions that then manifested in physical symptoms. The elusiveness and unpredictability of emotions very much symbolised the experience of the illness. As a sufferer myself I came to like this theory and therefore may have advocated it a little too much. For me it suggested that FM wasn’t in the head, but created by emotional expression (or repression), which in turn could be addressed through psychological support. For me, this bio-psychosocial theory suggested a potential ‘cure’, a real sense of control over the illness if it were to derive from within the psyche and the ‘self’, rather than the physical.
However, I am now coming to realise through recent experience that with my own FM, having dealt with many of the supposed triggers of emotional repression, anxiety etc, that my body still fights back. I wonder now if I was somewhat delusional to think if I really sorted out my own psyche then my FM would disappear. I am now starting to understand the psychological treatment plans that focus on the acceptance of the illness. I don’t want to accept my body has FM. I have way too many things I want to do with my life, to fit in, not to have to keep planning ahead and thinking whether I could physically cope. Because of the pressure I put on myself to cope and fight I like to think that it is just me that is causing this illness, therefore is my psyche not my body.
But having taken the pressure off myself recently I still suffer the same fatigue, fogginess, pain, aches as I always did. In fact I experience them more-so now because I have time to really pay attention to my body. Part of my research suggested a ‘perfectionist’, hardworking, high achiever profile. It was thought by the therapists that this may be a cause of the symptoms, pushing too hard, overdoing things, trying too hard to reach perfection. This certainly matched me.
I am now starting to understand my own perfectionist voice and coming to realise that this is in fact a ‘result’ of having FM not the cause of it; for one day I just want to feel my body is ‘perfect’. Just for one day, one week, one month, I want to wake up refreshed, ready to face a day, ready to exercise like I need too in order to lose weight, to read the books I want, to sit at a desk without needing to rest on a soft bed, the play my piano without my back aching, to knit without my shoulders locking into spasm, to accept social invites without wondering if I can last the night out. And to be able to wake up day after day without having suffered from living a normal day like everybody else can.
Problem is, how do I accept my own limitations when others around me can’t see what is happening inside of me? Some people are fantastic and do their best to listen and understand but others will tell me “you just need to exercise more”, “you just need to lose some weight”, you just need to stop being lazy and try harder”, “you just need to stop making excuses”. This sounds harsh but these are things people have said to me. However it is a very complex and difficult illness to explain and when trying to do so in such an ambiguous way it makes it very hard for others to really understand or believe what you are experiencing. So for people to understand my pain do I have to start really showing it, the impact it has on me. Should I have to become a ‘poor me’ for people to start to actually believing me?
That’s not me, I am tough and I am a fighter. But maybe it’s the toughness that is creating the symptoms, maybe I need to be weaker, be more vulnerable. But to do that I need to accept this is a physical part of me and as yet I still prefer the psychological causation theory. This I feel I can have some control of, something to fight back against my body with, but possibly creating the FM I am desperately trying to fight against.