Grief is a strong emotion, one that is common after a brain injury. So much has changed, and there is a sense of loss that is completely normal to feel. You may feel grief over:
- The loss of who you used to be
- Changes in your independence
- A loss of control
- Relationship changes
- The impact to your life plans
- Financial security
Grief can lead to profound sadness, discounting remaining abilities, and thinking about ‘what could have been’. Some other common emotions often experienced intertwined with grief can include [1]:
- Shock
- Sadness
- Anger
- Loneliness, helplessness, and guilt
- Fear and anxiety
- Feeling alone or that we won’t be able to cope are normal reactions
The dual process model of coping with bereavement/grief
In the past, you may have heard about the five stages of grief (denial, anger, bargaining, depression, and acceptance). You may experience all of these different feelings connected to grief, but the dual process model of coping with grief is more widely used to help navigate the complexities of grief [2].
The dual process model is focused on the balance between the reality of loss and moving forward after that loss [3]. It’s normal to go back and forth between feeling helpless and feeling hopeful, because grief is not something you experience in a straight line. Some days you may feel a lot of grief and have a hard time facing loss. Other days you may be able to acknowledge it but not be able to move through it. And then on other days, you may not feel it at all.
Ambiguous loss
Ambiguous loss is a term used to describe the emotional rollercoaster that exists between hope and hopelessness when there are changes due to an illness or injury. Even though you may be grateful for a lot in your life, you may still feel loss (and grief) around your injury and what has changed in your life [4].
Ambiguous (and the word ambiguity) means that it’s hard to get a clear answer. We normally want simple answers and solutions (like a yes or a no). This helps us mentally and emotionally understand next steps. But brain injury recovery is not simple, and there isn’t often a straightforward answer. Some days are good, others may not be. When we don’t know how a situation will turn out, it can be stressful and contribute to feeling loss [5].
Researchers have identified four distinct types ambiguous loss [6]:
- Loss of you, me, and us: This encompasses the loss of identity that the individual and family members experience individually, as well as their shared sense of their identity as a family unit.
- Loss of security: The loss of financial and emotional security as a result of the instability and upheaval caused by a brain injury.
- Loss of connectivity: The loss of a sense of partnership–often as a result of the changing nature of a romantic couple’s relationship after a brain injury.
- Loss of future: The uncertainty experienced by couples and/or family members as their former plans, goals, and hopes are forever changed as a result of a brain injury.
This is a tough experience. Unfortunately there’s no surefire way to navigate grief and ambiguous loss. It’s up to you and your loved ones to figure out what works for you and how to honour your feelings while also making sure you aren’t dwelling in them.
Coping with grief and ambiguous loss
The Canadian Mental Health Association recommends trying a few of the following strategies when coping with grief and loss [7]:
It is completely normal to feel a variety of emotions when coping with grief. In one moment, you may feel happiness when a nice memory comes to mind; the next, you may feel a swell of sadness. You may even feel relieved that this painful episode is over. Accept your feelings as they come, realizing that they may come and go along the way. Feelings that are difficult to process will ease as time passes.
You may be wrestling with positive and negative thoughts and feelings. Whatever you’re feeling, it’s helpful to have healthy ways of expressing them (rather than holding them all in). You can try journaling, creative writing, drawing, playing an instrument, or singing as some methods for expressing your feelings.
Allow yourself to smile and laugh like you normally would. Sometimes breaking into laughter can help you to get through difficult moments and remind you that there is a light at the end of the tunnel. Whether it’s watching your favourite comedy or sharing a joke with a friend–laughter can be part of the healing process.
Grief and loss are a part of life, and learning from difficult experiences can give you insight into yourself, your emotions, your relationships, and more. For example, have you learned something new about yourself or others during this difficult time? What gives you joy even on days when you feel a lot of grief?
A professional therapist can help you (and other members of your family) cope with ambiguous loss and grief [8]. Remember to take your time when finding professional supports. You want to find a provider that you feel safe and comfortable with. You may have to meet with a few different people to find the right fit.
Although you may feel lonely and isolated, connecting with others is a powerful way of coping with grief. Open up about your feelings to a trusted friend or family member (or a professional health care provider if appropriate). By talking about how you feel deep down, you may be able to connect with others who can relate and empathize with you.
It is normal for stress to feel overwhelming during the grieving process. Drugs and alcohol may seem like a solution for the pain at first, but they can actually delay the healing process and be destructive to your physical and mental health. If you work hard to have healthy sleeping and eating habits, you will naturally feel better during the grieving process. Moving your body is also helpful.
Do what you can to be kind to yourself and your body. This will in turn support your mental and emotional health.
Unfortunately, it’s easy to get caught up in the idea of returning to normal. But brain injury means that things are going to change, and most likely will never return to how they were. If you focus too much on that, it can be distressing. Instead, the focus should be on acceptance of what is—not perfection or a return to something else.
As hard as it may be, making room for this new part of your life is one of the most important steps in coping with ambiguous loss. That step can help the grieving process continue more naturally. A new relationship with yourself (and others) can form, supporting your mental and emotional journey [8].
Brain injury is often unexpected, and can feel isolating. Peer support groups offer a place for learning and for helping each other.
Brain injury associations may have peer-support groups you can attend. You can view a list of them on our association page.
Navigating grief and ambiguous loss is not a quick process. There will be good days and bad days, and grief may linger for several months. It will probably stay with you in some degree for the rest of your life. But with time, patience, and commitment to taking care of yourself, it will improve.
Mental health resources
[1] Coping with loss and grief. Centre for Addiction and Mental Health (n.d.). Retrieved June 22, 2023, from https://www.camh.ca/en/camh-news-and-stories/coping-with-loss-and-grief
[2] Schut, M. S. (1999). The Dual Process Model of coping with bereavement: Rationale and description. Death Studies, 23(3), 197–224. https://doi.org/10.1080/074811899201046
[3] Stang, H. (2020, April 19). The Dual Process Model of Grief: Navigating the spiral. Mindfulness & Grief: Meditation for Life After Loss. https://mindfulnessandgrief.com/dual-process-model-of-grief/
[4] Boss, P., & Couden, B. A. (2002). Ambiguous loss from chronic physical illness: clinical interventions with individuals, couples, and families. Journal of clinical psychology, 58(11), 1351–1360. https://doi.org/10.1002/jclp.10083
[5] About Ambiguous Loss. The University of Minnesota (n.d.). Retrieved May 30, 2023, from https://www.ambiguousloss.com/about/
[6] Godwin, E., Chappell, B., & Kreutzer, J. (2014). Relationships after TBI: A grounded research study. Brain Injury, 28(4), 398–413. doi: 10.3109/02699052.2014.880514
[7] Understanding and Coping with Loss and Grief. Canadian Mental Health Association (n.d.). Retrieved August 2, 2023, from https://ontario.cmha.ca/documents/understanding-and-coping-with-loss-and-grief/
[8] Lond, B. J., & Williamson, I. R. (2020). Acceptance, grief and adaptation amongst caregivers of partners with acquired brain injury: An interpretative phenomenological enquiry. Disability and Rehabilitation, 44(11), 2285–2294. https://doi.org/10.1080/09638288.2020.1829104
