Work

Dystonia counts as a disability and so is covered by the Equality Act (2010). This gives the employee protection by preventing the employer discriminating and requiring them to make “reasonable adjustments”. Reasonable adjustments are changes to the workplace to help employees cope with their dystonia. What is reasonable depends on context and will vary with job and workplace. Examples could include flexible hours, specialised equipment to reduce discomfort and adjusting position of a desk.

To claim a reasonable adjustment, the employee needs to disclose their condition to their employer. Ideally, this would be always possible but not all employers are supportive so it requires consideration. However, if there is a health & safety risk, then you must disclose otherwise you may be liable (examples include jobs involving driving or operating machinery).

If you have concerns about your employment you can always discuss with our advocacy service.

Family / friends

Managing dystonia may require lifestyle changes and it may be helpful to ask for support from family / friends for some activities. So an open discussion about the condition may be helpful if possible.

A good question to ask yourself is: “Am I asking for the same help that I would give to someone else if they were affected by dystonia?”

Home

Helpful aids in the home can include high backs / supports for chairs, special kitchen utensils (e.g. with thicker handles), walk in showers, aids to get in and out of bath, adjusting heights of shelves / items and speaking books.

Other tips from members of the Society include pacing yourself, not feeling guilty if housework not done, using kneeling pads or raised flower beds in the garden and gardening tools with longer handles.

Social

Many people with dystonia do not like going to social events and 75% tell us it has affected their social life. It is important not to get isolated and this can be a challenge.

Tips for coping socially include:

  • Using Dystonia Society help cards or leaflets to explain the condition (these can be obtained from the helpline).
  • Rest beforehand.
  • Sit down first so you sit where it suits you.
  • Wearing a scarf can help cover neck twisting.
  • Choose the menu to suit / soup can be difficult.
  • If you need help to cut food, just ask - people will understand

Disclaimer

The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.

The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.