A Grief Misunderstood by Carolyn Roy-Bornstein, MD

With my grief came guilt

Ten years ago, I got the phone call every parent dreads. My son Neil, then 17, had been hit from behind by a drunk teenaged hit-and-run driver while walking his girlfriend, Trista, home after a study date at our house. He was taken to the local hospital where he was diagnosed with a traumatic brain injury and quickly transferred to a Boston hospital’s intensive care unit. His girlfriend was not so “lucky.” She succumbed to massive head trauma and the next day was taken off life support.

I knew we had a long road ahead of us. Neil spent days in the ICU, months in physical rehab, and years in therapy and on anti-depressants. I grieved for everything Neil had lost: not only his girlfriend but also his memory, his concentration, his executive function, his sense of humor. What should have been the time of his life—senior prom, high school graduation, getting into the college of his choice—just turned out to be one long struggle.

But with my grief came guilt. After all, my son was alive while his girlfriend was not. Even from those early days, standing over Neil shivering under a skimpy sheet on a stretcher in the emergency room, wanting to warm him, I thought of Trista’s mother, Mary, and how she would give anything to feel Trista cold and shivering instead of just plain cold. When Neil showed signs of temporal lobe agitation, lashing out at the staff and at me, it was hard to take: listening to my normally sweet-dispositioned son berating his nurses and his mother. But I thought of Mary. Wouldn’t she love to hear Trista’s voice again, even if she were yelling?

At first I thought that what I was experiencing was a kind of survivor’s guilt by extension. My son had survived a horrific accident that his girlfriend had not. But I have since learned that what I was dealing with was something more. Something called disenfranchised grief.

Disenfranchised grief

Grief is often hidden because it is misunderstood.

Grief is often hidden because it is misunderstood.

The term “disenfranchised grief” was coined by Dr. Kenneth J. Doka back in 1985. He has written two volumes on the subject and defines it as “grief that persons experience when they incur a loss that is not, or cannot be openly acknowledged, publicly mourned, or socially supported.”* Examples often given include loss that occurs in relationships society does not recognize or countenance, such as gay lovers or those involved in extramarital affairs. Here, the mourner is not recognized because the relationship is not approved by society.

In other situations, the way the person died may affect how surviving mourners are perceived and accepted. Death by suicide or homicide, drug overdose, or AIDS, fall into this category of grief being somehow diminished because the death occurred in a way society may be uncomfortable with. The death of a pet is also often cited as another example of a loss society does not readily accept.

But a death need not occur in order for grief to be disenfranchised. Examples of these kinds of losses include a failed marriage or the loss of a job or the losses associated with illness or injury. This is the kind of mourning I was doing for Neil: grieving for the loss of the life we both had dreamed of for him.

The difficult aspect of dealing with disenfranchised grief is the misunderstanding of my suffering by so many around me. The parents of Neil’s dead girlfriend only saw in him all the things their daughter would never be: the high school graduate, the college student. Even close friends did not necessarily understand my grief after my son’s traumatic brain injury. When I began writing my memoir, Crash: A Mother, a Son, and the Journey from Grief to Gratitude, a friend looked at me, bewildered. “But Neil’s okay, right?” she asked. I suppose it was a legitimate question as Neil does, in fact, look “okay.” But as anyone who has suffered a traumatic brain injury or has a family member who has survived one knows, the associated losses and disabilities are often subtle or unapparent.

It took me many years to let go of my guilt over the grieving of Neil’s losses: to acknowledge and own my grief as real and legitimate. And that is the first step in helping someone to enfranchise their grief: to recognize their feelings as valid and worthy. To allow them to give voice to their feelings, and to try to understand those feelings. They then must be given the time they need to properly mourn their loss.

Some with disenfranchised grief may need to seek expert counseling, but the understanding and support of family and friends can go a long way in the healing process.

*Doka, K. Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington Books. 1989.

About the author

Dr. Carolyn Roy-Bornstein is a pediatrician, a mother, and an award-winning writer. She is the author of Crash: A Mother, a Son, and the Journey from Grief to Gratitude (Globe Pequot Press. Sept. 2012.) Her work has appeared in the Boston Globe, JAMA, Pediatrics, Yale Journal of Humanities in Medicine, several Chicken Soup for the Soul anthologies. She has been interviewed on radio and TV and speaks regularly to doctors, nurses, college students and civic groups about traumatic brain injury.


Special Collection on Brain Injury Journey

Special Collection on Brain Injury Journey

 This article is posted with permission from Brain Injury Journey – Hope, Help, Healing, Vol 1, 2014.


2 responses to “A Grief Misunderstood by Carolyn Roy-Bornstein, MD”

  1. Oh how I wish my wife could happen upon this article…it’s written so beautifully and tho not even one detail matches my accident and TBI I know my wife of 23 years suffers the stares and murmurs at the grocery at coffee and lunch with friends. I feel horrible for what this accident had done to her dreams…I try to not talk about my near constant and excruciating pain nightmares…headaches…difficulty thinking and using the right words (my old words)… worst is knowing there is just no way to support my wife and daughter every day still after 2+ years…AND SHAME I FEEL everyday. My accident was arguably 100% my fault (ask around our small town) and…I admit at least much culpability…

  2. E says:

    As I recover from a TBI myself (almost 4 years now), I want to thank you for shedding light on the lonely road that many of us travel as we recover. It’s so hard to appear “normal” on the outside, and be judged that way, while feeling tied up and frustrated on the inside. I am almost at the end of my recovery, but do feel a tremendous amount of grief for having had to face this uphill climb alone. Thank you for speaking for me, and I am sorry also for the losses you have experienced.

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