Am I still the same me? Emotional healing after stroke

Does this conversation sound familiar?

How are you?
I’m fine, how are you?
Fine, thanks for asking.

After my stroke at the age of 34, I often answered “I’m fine” or “I’m doing well” when people asked, but on the inside, I was struggling to understand what had happened to me and what it meant for my life, my goals, my hopes, and my career. Am I still the same me even though I can’t do all of the things I used to be able to do or speak how I used to speak? Although I had great therapists: speech, physical, and occupational, it wasn’t until months later that I realized I also needed help to process the emotional impact of my stroke. 

Most immediately, the focus after a stroke is geared towards recovering lost capabilities. What is not well addressed is the equally important emotional healing that is needed to rebuild your identity after stroke. The emotional health education that is provided to stroke survivors and their loved ones following stroke often mentions depression and anxiety as common but neglects to delve deeper into emotional healing topics. 

Stroke survivor and Stanford Professor Debra Meyerson, Ph.D. wrote her book Identity Theft: Rediscovering Ourselves After Stroke after going on her own emotional healing journey and realizing that few resources addressed the emotional needs of survivors and their loved ones. She and her husband created Stroke Onward soon thereafter to change the post-stroke care system to address this gap.

Grieving the loss of self brought on by Stroke

There is no specific model of emotional healing after a trauma such as a stroke but many people, be it the survivor, their loved ones, colleagues, and friends, have turned to the five stages of grief model that is described by Elisabeth Kübler-Ross and David Kessler in their 2004 book On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. 

It is important to note that for people with brain injuries, emotional health can be complicated by the fact that there may be physical damage to the brain which can impact your ability to regulate feelings and can change how you might previously have responded. This is why it is important to let your healthcare providers know how you are feeling so that they can support you in both your physical and emotional recovery. 

Five Stages of Grief

The Kübler-Ross and Kessler model does highlight five stages of grief however, these stages are not linear, meaning that you don’t have to go through each one before you reach the next stage. You may not experience all of the stages during your healing journey and you may cycle through them more than once. Grief is an absolutely normal response to the trauma that you have experienced, and you are not alone: many others have gone through the same thoughts, feelings, and processes.

The stages are: 

1. Denial – this may feel like numbness, shock, or avoidance. This is our body helping us put one foot in front of the other to make it through.
2. Anger – you may experience feelings of anger, frustration, or anxiety. Or thoughts like, “Why me?” and “Life’s not fair!” 
3. Bargaining – you may feel guilt or have thoughts like “if only I had…” or “I promise to be the best me if I can have all my old capabilities back.”
4. Depression – the commonly understood phase of grief; this can feel like sadness, numbness, overwhelm, or lack of interest.
5. Acceptance – this is not that you are “ok” with what has happened but that you have accepted that it did happen and are learning to live with it.

Resources to help your recovery journey

It can feel very isolating to be grieving the life that you once had as you come to a place of acceptance. Here are a few resources to help on this journey:

• Support groups: available both in-person and virtually, these groups are a great place to learn with peers and process the impact of your stroke. Stroke Onward is developing book group discussion guides to complement the reading of Debra Meyerson’s book Identity Theft. The American Stroke Association has a comprehensive listing of support groups
• Connecting one on one: seek out a trusted friend/family member or a peer who has had similar experiences to you.
• Books and other written works: a few books and articles are noted below but many others are available virtually and in print. 
• Find a mental health professional to help you on your journey. If you have health insurance, find out if these visits are covered and get a list of your local providers. If you do not have health insurance, Mental Health America’s website offers recommendations for care. Websites such as PsychologyToday also offer listings. 

Patience, grace, and time are important as you process and heal from the emotional impact of stroke. Accessing the support in the resources provided in this article can help too. In our next article, we will discuss the impact of stroke on your identities and how to rebuild your identity for a rewarding life.

References:

American Heart Association. (2018). Emotional & Behavioral Effects of Stroke. https://www.stroke.org/en/about-stroke/effects-of-stroke/emotional-effects-of-stroke.
Collins-Burke, A. & Cronwright, S. (March 18, 2021). Grief After Stroke. https://www.psychologytoday.com/us/blog/stroke-awareness/202103/grief-after-stroke.
Gregory, C. (May 2, 2021). The Five Stages of Grief: An Examination of the Kubler-Ross Model. https://www.psycom.net/depression.central.grief.html
Kessler, D. (2020). Finding Meaning: The Sixth Stage of Grief. Scribner Books.
Kübler-Ross, E. & Kessler, D. (2004). On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. Scribner Books.
Meyerson, D. E. &  Zuckerman, D. (2019). Identity Theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing.