It was relatively soon after becoming a consultant that I began to appreciate the impact of fear on the lives not only of individuals but also their loved ones. I insisted on indexing ‘fear’ in my book [1] and I thought that I would review those entries for this reflection. I am not a psychologist and have no formal training as such, but firmly believe that getting fears out into the open is itself therapeutic even if we feel inadequate in our ability to address them.
The problem is that fears may be realistic as well as inappropriate and thus identifying them is important so that strategies to address unrealistic fears can be adopted (by the vocational rehabilitation professional (VRP) or others) and realistic fears addressed professionally.
The first chapter on ‘arthritis’ documented that fear may dominate the lives of many with arthritis – of the unknown, that arthritis meant leading life in a wheelchair, loss of dignity, lack of professional help when needed and that their next movement will change their chronic nagging pain into excruciating searing pain or increasing disability. The importance of listening to the client was clearly expressed by one who stated that ‘talking to my health care professionals (HCPs) so that I can understand my illness helps me to cope – in this way fear is considerably eradicated and anxiety lessened’. The fear that performing activities will induce arthritic pain is common and may act as an excessive inhibition, thus perpetuating inactivity. The diagnosis of ‘arthritis’ may equate to a fear of pain, disability or dependency.
Often a fear of arthritis, multiple sclerosis (MS) or cancer magnifies an otherwise mild referred pain or sensory abnormality – often related to a family history of the disease in question. Experienced HCPs often uncover unrealistic fears e.g. that long-standing pain cannot be due to common musculoskeletal causes and must be caused by e.g. cancer or MS. Fear that employment will aggravate musculoskeletal pain, or cause it to recur, is common. The effect of this fear on the spouse may be critical – leading to over-protection or excessive sympathy.
Fears following a myocardial infarction or stroke are also common e.g. that many wives are frightened to leave their husbands alone at any time and many men have an equal fear. Fear of a further stroke, not only in the patient but also in the spouse, which may be out of all proportion; but may inhibit many activities including sex. Others will fear death. Families may have fears for the future in terms of their mobility, lifestyle and coping. Fears of job loss, particularly when the economic environment is poor, is genuine but must be addressed early by all HCPs.
For those with acknowledged serious illness, e.g. cancer of the breast, it is important to acknowledge that fears are reasonable – then try and maintain hope. Because of fear of cancer, friends and family may be inhibited from talking to those with cancer. Ask patients if they feel that their illness has affected the behaviour of other people towards her.
In summary, these fears identified in 1988, still seem realistic today. However, not everything is as it seems. During a period in the back pain clinic, I asked the patients directly: ‘what is it that worries you most about your condition’? Only 15% of the 86 patients asked denied having any specific fears. The commonest fear admitted by 64% related to potential future disability (loss of independence, work or both) or being confined to a wheelchair [2]. Nineteen per cent were worried about the cause of their pain and 2% had other concerns e.g. clicking in their back. It was good for doctors to have to realise that patients had other concerns apart from their diagnosis!
After this had been published, in spite of careful questioning about individual’s concerns in the clinic, three times within a few months, at the conclusion of my examination, I was asked ‘is it cancer doctor’? That demonstrated the hidden importance of an examination in clinical practice – and that one must always expect the unexpected fear…..
Conclusions
Most individuals in clinical practice have some fears relating to their condition. It is an essential part of clinical practice to identify them and sort out the realistic from the unrealistic. Families may have a similar range of worries that also need managing.
Andrew Frank
Trustee and Past-Chair, VRA
References
- Frank, A. and GP. Maguire, Disabling Diseases. Physical, environmental and psychosocial management. First ed. 1989, Oxford: Heinemann Medical Books.
- Grogan, E., A. Frank, and A. Keat, Patients in rheumatology clinics need reassurance. BMJ, 2000. 321(29 July): p. 300-300.