Abstract

“People” experience symptoms and may consult a physician, at which point they become “patients”. The physician may be able to quickly diagnose the disease process which is causing the symptoms and may have an effective treatment, which leads the patient back to being a happy healthy “person” again.

Sadly many things may block this positive scenario; the symptom may not be due to a definable disease process e.g. fatigue and stress, the physician may lack the experience or attitude to accurately diagnose and appropriately treat the disease e.g. rare diseases, the disease may not have a highly effective “cure” e.g. scleroderma and the patient may feel confused and discarded by a health system which is ever more bureaucratic and cost/time saving.

Most of the above factors may conspire to transform the “patient” into a new entity, the so called “difficult patient”. There is a vast literature on the “difficult patient”, but essentially it is a negative dynamic between a patient and the medical system, mostly the treating physician. As with all conflict situations there are two sides of the coin. From the patients perspective, the inability to accept reality or the real or imagined feeling of not being taken seriously or fully investigated may lead to them becoming “difficult”. Much research indicates that from the physicians side, inexperience and a lack of truly effective treatments for the patients symptoms are known risk factors. There are coping strategies to deal with both these problems which will be presented.

Patients who develop rare rheumatic disorders e.g. scleroderma, have a particular problem recently since the diagnosis of more common diseases e.g. RA has become more precise and timely e.g. ACPA antibodies and MRI joint imaging, whereas the early diagnosis of scleroderma remains an intuitive and challenging “algorithm driven” process i.e. cold blue fingers (common), puffy stiff fingers (less common but not rare) and fatigue (common) which may or may or may not alert the primary care physician to further pursue the diagnosis or refer to a specialised centre.

Once diagnosed, another problem arises i.e. a nihilistic approach to treatment options, in stark contrast to the multiple highly effective new biological agents for treating RA and other disorders. This may lead to an inappropriate delay in “managing and controlling” rather than “curing” aspects of scleroderma such as pulmonary or systemic hypertension or reflux oesophagitis with lung injury.

The opposite of a “difficult patient” is the undemanding, uncomplaining person who fully trusts the medical service offered for their rare disease which may in fact be inappropriate.

The solutions (for patients) to the above issues include; a demanding yet respectful relationship and dialogue with the physician, full access to information about their disease (being fully aware that much internet information Is unscreened and may be wrong), access to specialised clinic knowhow concerning their disease and a willingness to be a partner in the management of their rare and chronic disorder.

Case examples and various strategies will be discussed.