For some people, when they are physically sick, they go to a doctor and get treatment. Yet when it’s their mental health that is suffering, sometimes it can be more difficult to seek help – whether that’s from a doctor, support group, or family and friends.
Understandably, a rare disease diagnosis can be hard to accept at any age. People are often impacted emotionally, mentally, and physically. New changes bring new feelings and emotions; from anxiety about what the future holds, depression about lifestyle changes, and general feelings of frustration, anger, and isolation.
That’s why the mental health challenges associated with a rare disease diagnosis can be made worse when there is a lack of equity or barriers to accessing expert medical specialists and support in the community. In addition, the prolonged COVID-19 pandemic has created extra anxiety and isolation for people who can’t access their usual medical or support networks, or indeed find new ones.
All of this put together can impact a person’s well-being, as it may be hard to look after yourself, take your medicines correctly, attend your doctor’s appointments, perform daily activities and make the right decisions for you and your family.