Who Am I Now?

Cognitive and functional changes have a powerful way of challenging one’s identity and sense of self.  There can be a lot to grieve—career, community roles and relationships, as well as expectations and hopes for the future.  This grief process is often overlooked, because neurologic and cognitive changes are largely “invisible”—on the outside, a person may look the same and may mask cognitive deficits with hard work and compensatory strategies.  Research has shown that working toward self-clarity after cognitive changes can ease the grief process and help you move toward acceptance.

Identity Losses

The authors of the educational website What’s Your Grief offer the following helpful way to understand how different facets of identity can be affected by significant changes and loss.  When identity losses stack up, finding self-clarity in the grief process can be even more complicated.

• Relational Identity – Part of your identity is based on relationships with others (for example, you might be a sister, son, wife, friend, parent).  When you experience cognitive changes, your role might shift from being a spouse to being cared for.  There are still components of your original role, but there will also be shifts.
• Professional Identity – Phrases like “I am a teacher” or “I am a carpenter” show that we often consider our profession as a huge part of who we are.  We have knowledge, skills, and expertise related to our jobs.  Much of our time is defined by our jobs.  We often find community through our jobs.  If you no longer have your professional identity, it’s an adjustment to redefine who you are and what gives your days structure and purpose.
• Financial Identity – Though we don’t typically think of finances as part of identity, our ability to provide for ourselves and our family financially is often an important component of our sense of self.  Whether you’re in a constant state of financial struggle or take pride in financial independence, we often have expectations about what our financial identity should be.  Neurologic conditions and cognitive changes can deeply impact financial identity. From overwhelming healthcare costs to leaving a job, from a dual income household to a single income, illness can rattle our sense of financial security and independence and create a financial loss of identity.
• Physical Identity – Physical identity often defines how we physically exist in the world.  In basic ways, like having the ability to work any type of job, play with children, go for a walk or to the gym, and be free from pain, our physical self is fundamental to much of our daily life.  A neurologic condition, and even aging, can take a serious toll on the physical self, leading to a physical loss of identity that can be accompanied by a loss of self-worth.
• Spiritual Identity – After a neurologic diagnosis or cognitive changes, some experience a crisis of faith, while others feel an increased sense of spirituality.  In the former, there may be a sense losing something fundamental, almost like losing your footing.  The sense of religious community may also be lost, leading to feelings of loss of spiritual identity and isolation.

Moving Through Grief

There’s no easy way to move through grief, but we know it is important to work toward acceptance.  Unfortunately, your identity will never be what it was before the illness.  As with all grief, going back to how things were before the loss just isn’t possible.  Part of regaining your sense of self after loss is accepting that your identity will be different than it was before.

Different does not need to mean bad.
Human beings often don’t like change.  We have ideas about how life is supposed to look and who we are supposed to be.  When life doesn’t turn out that way, we might feel we’ll never have a sense of well-being.  Though we’ll always grieve the abilities and other things in life we lose, new things can also bring a sense of purpose, joy, and contentment that will become part of your identity.

You can bring the past into the present.
The person you were will still be part of you as you go forward.  The myth of “letting go” has caused many people to feel like the best way to grieve is to shut the door on the past.  But continued connection to the person we used to be can be a very healthy part of moving forward.

Take time to reflect on your identity.
Whether talking with a friend or counselor, playing music, writing, making art, or engaging in some other form of expression, consider how your identity has shifted.  Try to focus not just on losses, but also on gains: new relationships, positive changes in perspective, new skills or growth that have come from changes in professional or physical identity.  Though it’s easy to focus on the loss of self, rebuilding self-identity can come through an awareness of changes in yourself.  This means bringing aspects of yourself along, acknowledging some things will never be the same, while establishing new parts of yourself built on who you were before.

If you’re interested in speaking with a counselor or therapist, visit our guide on next steps here.

Learn More

Resilient Grieving by Lucy Hone PhD
It’s OK That You’re Not OK by Megan Devine
How to Carry What Can’t be Fixed by Megan Devine