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Key points
- Prolonged Grief Disorder has recently been recognized as a distinct disorder in the DSM-5.
- Approximately 10% of children and adults experience Prolonged Grief Disorder.
- Untreated Prolonged Grief Disorder can lead to significant physical and emotional conditions.
Loss of a loved one and grieving their absence is a universal, yet deeply personal experience.
For adults, the death of a partner, parent, child, sibling, or friend can be devastating. For a child, death of a parent, sibling, grandparent or a beloved pet may leave an indelible mark — and cast all the todays and tomorrows in unrelenting heartache.
After a death, many experiences unfold. First is grief, a personal response to the loss. As the emotional and physical experience of loss is expressed, mourning occurs. And finally, bereavement is the period of time where grief and mourning are deeply experienced — and adaptation to life after loss begins.
Taking time to grieve and mourn is a widely accepted way to move through a death. But for some, the experience is marked by enormous emotional and physical pain. Instead, the bereaved child or adult is overwhelmed by a profound, heightened state of immeasurable yearning and a mourning that feels timeless.
The Stages of Grief
For most people moving through a loss, the first experience after a death is called acute grief. This is a normal reaction to loss and generally involves intense, overwhelming sadness and a longing to be with your loved one. Anguish, despair and other significant emotional pain accompanies acute grief as does a multitude of strong physical reactions, like chest pain, diffuclty breathing, heart palpitations, stomach aches, insomnia, and a dulling of your senses. During acute grief, the world can feel surreal, and children and adults may feel detached, numbed and frightened. Grieving is a process, and as time and support from others is provided, acute grief eases and generally moves into the next stage.
Integrated grief is the next stage in the grieving process by which a child or adult has found a way to adapt to the enormous loss of a loved one. This doesn't mean that grief is "done" or a child has "accepted the loss" or that an adult is "over it." Instead, grief and mourning have merged — or integrated — in a way that enables life to go on in spite of the death.
However, research reports that about 10% of children and adults who experience a death of a loved one do not reach this integrated grief stage. Instead, they struggle with a distinctly diagnosable condition called Prolonged Grief Disorder, where the ability to adapt to the loss does not occur.
Symptoms of Prolonged Grief Disorder (PGD)
Prolonged Grief Disorder will vary in intensity, but for children and adults, grief reactions occur most of the day, nearly every day. For children, the death which caused this experience must be 6 months or longer, and for an adult, 12 months or longer. Individuals who experience Prolonged Grief Disorder have significant distress in social, occupational, or other important areas of functioning. Emotional numbness, loneliness, identity disruptions (who am I without you) and a marked disbelief about the death leaves many feeling life is meaningless. A yearning for their loved one is palpably felt in nearly every aspect of their life. Because of this anguish, studies show there is a high risk for self harm and suicidal ideation for children and adults with PGD.
It's taken decades for Prolonged Grief Disorder to be acknowledged as a separate and distinct category, but it was finally included in the World Health Organization's ICD-11 in 2018, and recently approved as a formal diagnosis by the DSM-5 steering committee in 2020 here in the United States. Finally having Prolonged Grief Disorder recognized as a distinct condition helps to take away some of the shame and stigma for bereaved individuals. Often, individuals with complicated grief reactions were wrongly viewed by health professionals and the general public as weak, too sensitive and needing to buck up and get on with things.
Addressing stigma further is the award-winning Netflix show After Life, written and starring Ricky Gervais, which highlights Prolonged Grief Disorder in an authentic and meaningful way. Gervais writes and directs his character, Tony Johnson, with such realistic layers of prolonged grief that it educates uninformed viewers — and helps those who are mourning feel understood. Media like this helps reduce the tendency for others to shame those who "grieve too long," or think a prolonged grief reaction occurs because someone is flawed, lazy or needs to snap out of it already.
Medical validation of this condition, film and television and other teachable moments can offer compassion and greater understanding for children and adults struggling with Prolonged Grief Disorder.
Tips for Moving Through PGD
Prolonged Grief Disorder is not part of the normal grieving process and requires immediate intervention. Without treatment, the condition can persist indefinitely, leading to substance abuse, suicidal thinking, sleep disturbances, broken heart syndrome, and functional difficulties at school, work and home.
- Proper Diagnosis. If you or someone you love struggles with painful, complicated grief after a death, and appears to have difficulty with daily life, it's time to get a proper diagnosis. A skilled mental health professional in grief and trauma will be able to evaluate and diagnose your symptoms. It is also wise to have a full medication assessment to rule out any co-existing conditions as Prolonged Grief Disorder can place enormous stress on the body.
- Psychotherapy. Talk therapy is a first-line intervention for children and adults with PGD. Finding a trusting clinician who specializes in bereavement can help you make sense of your loss, ease emotional and physical pain, and integrate your grief so you can make adaptations to your life in meaningful ways.
- Medication. Medication like anti-anxiety and/or anti-depressants may be a way to ease symptoms of anxiety, depression, insomnia, etc. as you move through your bereavement. These may be recommended for several months as you address your grief, attend to your recovery and aid in your reconnection with world.
- Connection. Grief can leave you feeling detached and disconnected to others. Or maybe your pain feels "better" living in a bubble away from the world. While it is common for children and adults to isolate or push away from concerned friends and family, community connection will be vital to your recovery.
- Remembrance. Find ways to keep your loved one with you, with new traditions and new ways of honoring them. This is called remembrance and is a deeply meaningful way of adapting to your loss.
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