Mental Health Awareness Week: Spotlight on rare disease

Research carried out for the first time by Rare Disease UK indicates almost all patients and carers living with a rare disease have felt anxious, stressed and low

Living with a rare condition can have a huge emotional impact on mental health and wellbeing, yet about half of patients and carers reported that their doctors have never asked them about their mental health. Patients and carers stated that they had felt emotionally exhausted and 70% said that they have been at ‘breaking point’ because of their rare disease.

A significant number of patients and carers reported having had suicidal thoughts (36% of patients and 19% of carers).

One patient said: “I feel suicidal because I feel like I’m banging my head against a brick wall and with the condition comes stress, I’ve had nothing but stress with it, because you go to the doctors and… they don’t know anything about [the condition].”

Sophie, a patient affected by three rare conditions, said: ‘”These conditions have devastated my life, there are days when I cannot cope and I have panic attacks about it.”

The unique challenges faced by rare disease patients exacerbate mental health issues experienced by both patients and carers. Low awareness and understanding of rare diseases resulted in some patients and carers reporting being mislabelled as neurotic or having health anxiety, and some were even misdiagnosed with serious mental health conditions. This further delays diagnosis and access to appropriate treatment.

Dr Jayne Spink, Chair of Rare Disease UK said: “It is well known that living with a chronic or progressive condition can have a negative impact on mental health. There are additional challenges for patients with rare diseases and their carers – all too frequently these mental health issues are overlooked. This study by Rare Disease UK, shows how incredibly important it is that mental health needs assessments and access to mental health services become properly integrated into the care that rare disease patients receive in the NHS.”