It is common for rare disease patients to have unusual constellations of symptoms, meaning physicians do not recognise the underlying pathology. One reason for such a delay is that the patient is not recognised by primary healthcare professionals as having a serious physical health problem. This delay prevents patients from accessing treatment and will often cause unnecessary deterioration of their condition. An average patient waits for four years and sees five different doctors, but some may wait decades and others will never receive a diagnosis. My own condition took 17 years to be confirmed, and this is not particularly unusual. In this essay I shall describe the problems faced when rare diseases are mistaken for psychological conditions and how this relates to the challenges that having a rare disease poses to the maintenance of good mental health.Ī major barrier to a rare disease patient receiving appropriate treatment is the delayed receipt of a diagnosis. As such, the relationship between rare diseases and mental illnesses is complex, and the concurrent management of the two fraught with difficulty for both doctor and patient. However, patients with rare conditions are also frequently misdiagnosed as having psychosomatic illnesses when their symptoms are difficult to align with a common condition. When these impacts are considered in the context of widely recognised risk factors for the development of mental illness, it starts to become clear why 69% of rare disease patients report experiencing depression and 82% experience anxiety and stress, compared to a combined rate of approximately 17% in the general population.
Rare disease patients throughout the UK consistently report that the effects of their condition stretch vastly beyond the medical, and have a large impact on many aspects of their lives. Balancing the wish to have completely honest conversations with doctors with the worry that they will no longer take you seriously if you do so. Balancing the time spent in hospitals as a patient with the time spent studying there as a medical student. Balancing the need for a clear diagnosis with the need to get on with life.
#All my patients series
This letter argues that these common experiences of rare disease patients have impacts upon the way in which their psychiatric care should be offered and managed, and that sensitivity and understanding surrounding these issues should be considered a necessary part of effective care for rare disease patients.Īs a person with a rare disease, one way in which I view my life is as a series of precarious balances. The unusual nature of such diseases intrinsically predisposes an individual to obtain an inaccurate diagnosis of a psychosomatic disorder, a diagnosis which can often be further complicated by the presence of genuine psychiatric symptoms. This letter considers the possible reasons for this in terms of the many ways in which a rare disease impacts on an individual’s life, and how these impacts can be strongly related to factors which predispose to mental health difficulties.įurthermore, issues surrounding mental health can also play a significant role in the process of diagnosing a rare disease. The incidence of mental health disorders is significantly higher in individuals with a rare disease, compared to the general population.
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