In the UK, up to 25% (1 in 4) of strokes occur in individuals under the age of 65 (NHS Choices 2017). Studies on young stroke survivors suggest that they report greater unmet needs than older stroke survivors. The needs and demands may include childcare responsibilities, work disruptions, and overall disturbances of family routines and family plans. Understanding experiences of younger people with stroke is critical given the longer length of time that they will live with potentially lasting impairments and the ripple effect on social and financial security. Although the focus of the stroke collection was not exclusively on young people who had experienced a stroke, one-third of our interview collection included individuals who were under the age of 55.
Young stroke survivors within our collection of interviews were largely caught off guard by their stroke, either unaware that it was possible to have a stroke at a young age and/or surprised given their active and healthy lifestyles. Individuals who experienced symptoms over longer periods of time did not attribute them to warning signs of stroke. One woman thought her headaches, heart palpitations, and fatigue were due to a combination of marital stress and a viral infection. Reflecting back she realised that these were TIAs, critical warning signs of her impending stroke.
Many individuals experienced delays in getting a diagnosis. Some people were misdiagnosed with issues ranging from anxiety problems to inner ear ailments. In two cases, individuals felt discriminated against when providers suspected physical and substance abuse. In these cases, individuals were sent home but sought help again when symptoms persisted.
Michelle feels that is she was diagnosed sooner she would have recovered better.
Following stroke, some individuals commented that they felt like a different person, with little semblance to their former sense of self.
She describes her stroke as a bereavement.
Among individuals who identified themselves through recreational hobbies, it was particularly difficult to come to terms with loss of mobility. When fatigue, memory, and concentration were affected, it was important to break tasks into smaller components, set smaller goals and rest frequently. This was frustrating for individuals who were used to multi-tasking (i.e., juggling work, childcare, social, and recreational schedules).
Most individuals experienced disruptions in employment, either temporarily or permanently. At times, the husband, wife or partner of the person with stroke also took time from work, particularly when young children were in the picture, leading to role adjustments and sometimes financial strain.
She talks about how the stroke has impacted work, driving, family and future plans.
Some individuals were concerned about the impact they were having on their children and/or husband, wife or partner, even though in many cases, the husband, wife or partner reassured them that everything was okay.
He talks about his relationships with his wife and his concerns for the future.
In some cases, relationship strain was experienced. One woman was in the midst of reconciling with her husband around the time she had the stroke. They separated shortly after and she worries that the additional strain from stroke caused the separation. Another man with stroke and his wife sought out counselling to help them adapt to the changes in their life brought on by the stroke.