The relationship between dystonia and mental health can be complex, 
and everyone’s experience will be different.

For some people, mental wellbeing is affected during the journey to diagnosis. Many people with dystonia describe long diagnostic delays, and some are initially misdiagnosed with psychological conditions before receiving a dystonia diagnosis. Although awareness of dystonia is improving, this experience can be frustrating and emotionally challenging.

Being diagnosed can also bring a wide range of emotions. You may feel relieved to finally have an explanation for your symptoms, while also feeling anxious, overwhelmed, or uncertain about what the future holds. These reactions are completely normal and can take time to process. Living with a long-term condition like dystonia can affect many areas of life, which may also have an impact on your mental health over time.

Some people living with dystonia are also diagnosed with mental health conditions. Research shows that rates of anxiety and depression are higher in the dystonia community than in the general population. This does not mean that everyone with dystonia will experience mental health difficulties, but it does highlight the importance of recognising and supporting mental wellbeing alongside physical symptoms, discomfort, or other non-motor symptoms.

Managing mental health problems in dystonia

Support for mental health can vary, and what helps will be different from person to person.

Common treatments include medication and talking therapies. Medications such as antidepressants or anti-anxiety treatments can help some people, while talking therapies may be just as effective, particularly when symptoms are mild or moderate. Talking therapies offer a safe space to explore thoughts and feelings and develop ways to cope. These include approaches such as cognitive behavioural therapy (CBT), counselling and psychotherapy.

Some medications used to treat psychosis can carry a risk of movement disorders, including tardive dystonia. If you are living with dystonia and are prescribed these treatments, it is important to discuss the potential risks and benefits with your doctor.

Many people also find other activities support their mental wellbeing, such as physical activity, relaxation or complementary therapies, creative activities, volunteering, or social involvement. What works will depend on the individual and the type and severity of dystonia, so it is always best to speak to your healthcare team before starting something new.

If you are struggling with your mental health, support is available. Talking to your GP, specialist team or a mental health professional can be an important first step.

If you require emergency help do not delay reaching out. Call 999 or speak to someone 24/7 at Samaritans by calling 116 123.

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