Overview, Grief and Chronic Sorrow

Depression may be thought of as feeling blue nearly every day for much of the day, not having any motivation or lacking a zest for life. While somewhere between 3% and 11% of the general population reports being depressed, the rate for people with chronic disabilities is closer to 30 – 50%.

Certainly, having a chronic disability may be considered something to be depressed about; however, the likelihood that someone will become depressed is not always related to the degree of disability. For instance, a study by Cansever and his colleagues found that 34.7% of their patients whose limb was amputated due to trauma were depressed, whereas 51.4% of those whose amputation was due to diabetes or vascular disease were depressed. Therefore, the likelihood that a person living with a chronic disability will become depressed depends on a variety of factors, including personality and social support.

Depression is distinguished from the grieving process that follows traumatic loss or the diagnosis of a progressive disability. After spinal cord injury, brain injury or stroke, for example, the individual goes through a process of grieving for things lost—physical, emotional and material. Eventually the individual begins the process of accommodating or compensating for changes as part of the recovery process.

Along the way, a person experiencing loss may go through a number of stages or emotional responses:

• Denial – This can’t be happening to me.
• Anger – Why me? This is not fair.
• Bargaining – What can I do to make this go away?
• Depression or Sadness – All that I planned in life is gone.
• Acceptance – This is the new reality—better get on with life.

Although there is a general progression through the stages, people can fluctuate between stages. There is no set time that grieving should take. A challenge for family caregivers is that they must support the loved one’s grieving process while going through the same process themselves. Caregivers can help by:

• Treating grief responses as reasonable reactions to trauma and loss
• Supporting the individual to work through the stages
• Encouraging sharing with others in group settings

In progressive diseases (e.g., ALS, Parkinson’s disease and multiple sclerosis), individuals may be unable to move forward due to the uncertainty of the future and their physical and mental condition. Each loss in the progression is grieved in turn and there is anxiety associated with being unable to predict how long it will be before the next loss. Degenerative diseases have been associated with chronic sorrow, a pervasive sadness that is permanent, periodically intense and progressive in nature.

Chronic sorrow differs from depression in two ways:

• Chronic sorrow is an on-and-off sensation rather than a relatively consistent disturbance in mood.
• Chronic sorrow does not necessarily interfere with a person’s daily routine, whereas depression interferes with day-to-day functioning.

Chronic sorrow is characterised and caused by losses in

• Hope
• Control over the body
• Integrity and dignity
• Personal identity
• Faith that life is just
• Social relations
• Freedom

Chronic sorrow should be considered to be a natural response to progressive loss. Caregivers should help people with MS and other progressive diseases find hope in relation to what they still can achieve in their lives. Helping loved ones understand that chronic sorrow is natural is a key to helping them cope. Focus on personal attributes that remain, such as a sense of humour, faith or a positive attitude toward life. Caregivers should also be aware that chronic sorrow may put an individual at greater risk for depression, even though that is not inevitable.