Strokes happen quickly and can leave devastation in their wake, impacting so many areas of life: the ability to walk, talk, use hands and arms, live independently, participate in careers, be a spouse, partner, parent, friend, and so much more. No matter if the stroke was minor or massive, it is normal to experience a sense of loss. There is no single, widely accepted definition of loss of sense of self within brain injury literature. However, there are several points of consensus among authors about its characteristic features. First, loss of sense of self involves conscious awareness on the part of the survivor that they are somehow “not the same person” as pre-injury, which can result in a range from feelings of differentness to a total disconnection from the person’s past identity. Second, loss of sense of self typically involves the survivor making negative evaluations about post-injury changes in their functioning. Third, loss of sense of self is typically associated with emotional distress, which can manifest itself in a variety of emotional states, including anger, anxiety, depression, and grief.
These losses may need to be grieved as part of the emotional rebuilding process. Finding support and having a framework to build understanding is a mainstay of dealing with other kinds of loss, and can be incredibly helpful not only to the survivor but also to their loved ones, who are also experiencing a loss. It can be helpful for the entire support system to recognize this so they can support each other and grieve that loss together.
While there is no singular model for the emotional journey to recover after stroke, many people find it helpful to consider the Five Stages of Grief, developed by Elisabeth Kübler-Ross, MD and David Kessler in their book On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss (2004). While navigating this part of emotional recovery, it is important to remember that grief is not linear and feelings may fluctuate over days, months, and even years. Some people may experience all of the stages while others may experience only some of them. David Kessler more recently published Finding Meaning: The Sixth Stage of Grief (2020) where he wrote in-depth about a new stage of grief – finding meaning. “Your loss is not a test, a lesson, something to handle, a gift, or a blessing. Loss is simply what happens to you in your life. Meaning is what you make happen.” As the emotional healing journey moves from the earlier stages of grieving towards acceptance, reflecting on meaning and purpose is an important step toward rebuilding.