Nick Meade
Director of Policy, Rare Disease UK
Our study of the mental health of people affected by rare conditions – either as patients or those who care for them – showed that more than 9 of 10 had felt anxious or depressed, and several have had suicidal thoughts. Yet the majority had never been asked by healthcare professionals about their mental health.
The relationship between specific rare conditions and mental health is complex and varied. Some conditions have neurological components causing atypical mood or behaviour. People may be living with the long-term impact of the condition, which might be progressive or life-shortening.
Others have physical symptoms which take a toll on mental health; these might be symptoms that change one’s appearance from what is considered normal or symptoms that make one less independent in everyday life, having to avoid being too far from a toilet, or one’s medicine or having to avoid sunlight. Of course, living with pain, whether it is chronic or episodic, is a burden that can damage one’s mental health.
Low awareness of rare conditions makes our community’s experiences less relatable and so sympathy, empathy and understanding are harder to find.
Amplification by rarity
A lot of this will sound familiar to those living with common-complex conditions, but rare conditions work as an amplifier to experiences or challenges.
Low awareness of rare conditions makes our community’s experiences less relatable and so sympathy, empathy and understanding are harder to find. A major contributing factor to poor mental health were issues specific to managing rare conditions in the health service. Slow diagnosis, symptoms being dismissed and the accusation that ‘it’s all in your head’ are all well-understood challenges around rare condition diagnosis that we found was affecting mental health too.
Similarly, care coordination, where clinicians from a range of disciplines must coordinate to deliver optimum care is contributing to poor mental health. The burden of having to fill this gap, either as a patient or carer, where we see people having to step in and coordinate between clinics themselves, can create a negative spiral.
All of these experiences can be magnified again by a minority background, which can add an additional element of isolation, potentially worsening mental health outcomes further.
A further reason to deliver
Mental health is a component of the overarching UK Rare Diseases Framework (2021), the five-year policy that commits to improving outcomes for people with rare conditions. There needs to be a focus on empowering healthcare professionals who treat rare disease patients and on the integration of mental health support with rare disease services. Improving the mental health of our community will be an added benefit of delivering the UK Rare Diseases Framework.
