I recently completed the poll on how Crohn's had impacted on my life, and had noted that there was a missing section, I would have liked to vote on, how the disease had affected my mind.
Has any reasearch been done on the results of a diagnosis of a long term chronic illness on the individual? How their view of themselves might change etc and what help might be needed? I had problems with self esteem for the period of time I could not work at all, this hooked into issues from my childhood, and still can kick back in now I have had to retire!! When I first started to go out again I did have agoraphobic problems, the core issue being fear of a faecal accident whilst out. In more recent years I do fear falling (even with a walking stick) as have brittle bones from the steroid use.
I feel that when you add in the reduction in required nutrients being absorbed, the fatigue from this and pain when the illness is active, we could do with support from our General Practitioners and Consultants, more than just the drugs to control the illness itself. Regular checks to ensure our levels of iron, B12, Vit D and others are at a good level, an understanding that "within normal levels" is not enough for many people to cope, rather than someone waiting for the patient to get so bad they yell for help!
More advice at the start, about nutrient losses, the effect of dehydration on fatigue, I learnt this from a work colleague not a medic. If it is shown that a proportion of us do have problems that require CBT and or meds, maybe those of us who have these long term conditions could look to proving that the Health Service would spend less if they dealt with these issues as they came up (preferably before they came up) rather than waiting for the crisis.
Am I nuts!!!
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