The physical and mental consequences of myotonic dystrophy may influence the ability to socialize. People outside the direct family are often not familiar with the disease, and may find it difficult to cope with fatigue or lack of initiative. Discuss any difficulties with your treating physician, who may refer you to health care professionals that can support you in these issues.

Myotonic dystrophy may also influence the relationship with the partner or other relatives. Fatigue, muscle weakness, gastrointestinal problems or other physical symptoms may play a role, but more often the changes in personality or behaviour are of more importance.

The partner often takes more responsibilities for household and informal care, which may lead to increased burden for the partner. Timely recognition of problems is important in order to enable adequate support and help. A psychologist or social worker can be helpful in these situations. Also, sharing experiences may be supportive. This is possible at Spierziekten Nederland or Iemand Zoals Ik.

See also the brochure ‘Myotone dystrofie, Omgaan met de ziekte’ by Spierziekten Nederland, as well as the patient brochure ‘MD1: You are not alone (Je staat er niet alleen voor)’ (in Dutch).

Having a neuromuscular disease may also influence driving. See for more information the brochure‘ Neuromuscular diseases and driving‘ (in Dutch).