When families or individuals first find out about a rare syndrome it can be a distressing time. There are often months of waiting for a diagnosis, numerous tests and visits to various medical establishments. It’s important to understand that for any news of this kind there are a series of stages of an adjustment that people go through.
1.Shock – A state of numbness, both physical and emotional. This period may last for a few hours to several days.
2.Denial – Can last anywhere between 3 weeks to 2 months. Denial is a defence mechanism that allows the implication of an injury to be gradually introduced. Denial is only maladaptive when it interferes with treatment or rehabilitation efforts.
3.Anger / Depression – A reaction to loss, and to change in social status and treatment. This may include withdrawal, internalised hostility, self-blame, worthlessness, suicidal thoughts or grief. Individuals may grieve for their change in body image, function, former satisfaction that may be derived, or for the loss of future expectations based on the function that is lost.
4.Adjustment / Acceptance – This stage does not necessarily imply happiness about ones disability, however allows the relinquishment of false hopes and successful adaptation of new roles based on realistic limitations and new potentials. May benefit from seeing other people in similar situations. The individual feels comfortable with the changed self.