MCITP Family Support Network

A community of families dedicated to early intervention in Montgomery County, MD


What is “Chronic Sorrow”?


Chronic sorrow is defined as normal grief responses which are “pervasive, profound and continuing.” as parents, siblings and other family members live with “unremovable loss and unmending wounds (Roos, 2002).”

Chronic sorrow is sorrow or sadness continuing over time in a situation that has no predictable end. Because the situation is ongoing, the sadness or sorrow is cyclic and recurrent. Chronic sorrow can be triggered either internally or externally and sometimes brings to mind other losses, disappointments, or fears. Chronic sorrow is also progressive and can intensify even years after the initial sense of loss, disappointment or fear.

“It is about living with the realization of a loss that cannot be removed and that continually requires energy for adaptations….It is about year upon year of dealing with the inevitability of loss, of continually negotiating reality demands required by the loss, and of contending with ongoing and resurgent grief responses (S. Roos).”

One of the most important elements of chronic sorrow is repeatedly experiencing the differences between the abilities of our child and those of his or her typically developing peers. This experience can be profound.

What is the difference between regular grief and Chronic Sorrow?


Hearing a diagnosis and/or becoming aware that your child has special needs often brings about acute, intense grief reactions in both you and your spouse/partner and other family members. As parents raising children with special needs, we often talk about “before” and “after” we heard the news. Our worlds change and our families change forever. Whether we like it or not, we have involuntarily joined the “disability community.”

Acute grief is the first, immediate response to our experience of loss. Chronic sorrow is ongoing over time. Acute grief can include feelings of numbness, denial, fear, anger, a feeling of being crazy, intense feelings of isolation, inability to function, and overwhelming sadness. These feelings are normal and a natural part of the process.

During the first three years following a diagnosis or recognition that our child has special needs, we often experience both acute and chronic sorrow.


First Aid Principles

 


 When we or our family members are grieving, we should remember:

1. Every family member grieves uniquely, in terms of pace, emotional expression, and ability to receive support. Often mothers are “farther along the path” of grief, because they spend more time with the child and must face the reality of the child’s disability more quickly or more intensely than the father or other family members. As women, mothers have more permission from society to express feelings and to ask for support. Fathers, on the other hand, may feel the need to “be strong” for their wives or partners. These differences may lead some mothers to feel that their husbands never shares their feelings, while the husbands feels they must protect their wives by not sharing their feelings with them.

2. It is normal to struggle with guilt, shame, or anger about your child’s special needs as well as feelings of grief.

3. Often we find ourselves needing to blame someone for what has happened to our child or family. Sometimes we direct this blame toward other family members or toward ourselves.
4. Sometimes our extended families cannot or do not offer the support we need.
5. Numbness, denial, depression and anxiety are common reactions after receiving a diagnosis or learning that your child has special needs.
6. The grief about our child’s disabilities can also bring to the surface past griefs, especially those that have not been dealt with. We may be surprised to find ourselves suddenly thinking about or talking about the death or illness of a loved one, some previous trauma, or other loss. Our brains are wired so that a current loss resonates with all past losses, especially ones that have not been well-resolved. Finding ourselves grieving for something that happened 10 years ago, for example, can make us feel “crazy” but this is a normal part of the grieving process.
7. When we are grieving, meeting the needs of our other children, our spouses, or our jobs can be difficult or feel impossible.


8. Chronic sorrow can begin at any time.




Ongoing Loss

As many of us know, grief occurs in “stages,” starting with denial and moving through to acceptance. We are taught that loss is an event (or events) from which we will eventually recover. We are encouraged to work toward “getting past” the loss, “accepting” the loss, “integrating” the loss and building a life beyond the loss.

However, when we are raising a child with special needs, we can’t “get past” the loss because the loss is ever-present. Because the loss never goes away, the grief also never fully goes away.

Chronic sorrow is about reality; the reality of responding 24 hours a day, 7 days a week, from the time of our child’s birth or within the first months or years of his/her life until our child reaches the end of his or her life. Responding to the special emotional, medical, and developmental needs of our child. Parenting a typically-developing child is an exhausting, anxiety-provoking task, which hopefully carries the rewards of watching the child develop attachments, play, grow, learn and move into the larger world. Parenting a non-typically developing child carries more emotional exhaustion and anxiety with fewer rewards, and the knowledge that our child will remain our responsibility for his/her lifetime.

In addition to the emotional challenges we face, we also have unique, ongoing practical challenges when raising children with special needs:

1) Ongoing medical expenses, including prescriptions, assistive devices, therapies, and/or special foods or supplements.

2) Difficulty and/or fear of finding babysitters who will babysit our child with special needs.

3) Having to reduce job demands or become a one-income family so one parent stay home with their child.

4) Arranging siblings’ schedules or being unable to participate in their extracurricular activities because of the special needs of their brother or sister.

5) Getting ourselves and our families to doctor appointments, therapy sessions, family gatherings, church, the grocery store, etc.



Ongoing Healing

Understanding what chronic sorrow is helps us better understand and address the emotional needs of ourselves and our families as we move forward into our new or changed lives.


Things to remember:

1. As grieving human beings, we have “denial” for a reason. It is an important psychic mechanism that allows us to incorporate information at our own speed.

2. We may feel we should or will “get over” the loss, and we may feel that society (friends, extended family, work colleagues) are pushing us to do it now. But we should remember that everyone grieves at their own pace and that because our child’s disability is ongoing, it is natural, normal, and expectable that we will continue to feel sad, angry, and anxious from time to time, and that at times we may experience a recurrence of acute grief.

3. It’s important to identify things in our lives that are triggers for chronic sorrow—for example, IFSP meetings or discussions with therapists or teachers, hospital and doctors’ visits and family gatherings—can all trigger our feelings of grief. Here are some common triggers parents experience.


A. Missing developmental milestones


B. Being in public places (the park, the grocery store, a restaurant) and seeing typically developing children the same age as our child with special needs


C. Comments by strangers or family members about our child’s differences


D. Behavior problems in public places


E. Family gatherings or other family social situations: Comments may be made that upset us, or we may compare our child to typically-developing, same age cousins


F. Doctor appointments


G. Trips to the Emergency Room or to hospital: we (both parents and children) may be treated differently than a family with a typically developing child, which can make us feel more different, isolated, and vulnerable.


H. Experiencing another sorrowful event: death of significant others, trauma, illness of significant others.


3. Research has found that feeling-focused support groups, either peer-to-peer or professionally-led, are a powerful defense against the isolation and loneliness of parenting a child with special needs.
4. Focusing on the strengths and resiliencies of our families and our child keeps us focused on what we CAN do, not what we can’t.

5. Taking a support person with us to difficult appointments or public gatherings that might be a trigger of our sorrow can be a very helpful support tool. A support person can provide an extra pair of eyes and ears when we may be emotionally flooded and not hearing information very well.
6. As cliché as it sounds, laughter is great medicine. Often our ability to laugh is the first thing to go after our child is diagnosed with a delay or disability. But, finding another person to laugh with—another parent who faces similar challenges, a spouse, a friend— or enjoying a funny book or comedy brings fresh light to a cloudy day. Laughing not only feels good, but research suggests it’s actually physically good for our health.
7. Staying physically healthy helps to lessen the effects of chronic sorrow. It is easy to feel too tired or overwhelmed to eat well or to exercise. But, research proves that nutritious foods and regular physical movement combat depression.

 
Chronic Sorrow: Will it ever go away?

It gets better. Chronic sorrow ebbs and flows. It doesn’t mean we will feel sad forever. It doesn’t mean that we won’t find joy and promise in our child with a delay or disability. Chronic sorrow means that we travel an emotional road that climbs and dips. We can live happy and fulfilling lives, but the grief that we experience on behalf of our child with special needs endures. Sometimes it can take us by surprise. We may find ourselves driving in the car or in line at the grocery store and suddenly overwhelmed with grief. And sometimes, for a while, it will disappear altogether.

The most important thing to remember is that your feelings of loss, guilt, sorrow, and/or anger are completely normal. These feelings are part of the process. They are part of our own special needs as the parents of children with special needs. Just as everyone grieves differently, the salve for chronic sorrow is different for every parent. Recognizing and accepting our sorrow is the first step. Only then can we use the tools of knowledge and awareness to heal and strengthen ourselves as we accompany our child on this journey.


References


This article by Amy Kealiher is an adaptation of the presentation, “Chronic Sorrow: A Key Concept in the Social-Emotional Care of Families and Their Babies in Early Intervention, “ given by Elizabeth H. Maury, Ph.D. to MCITP staff in 2008.


Other resources:

Fialka, J., and Mikus, K. (1999) Do you hear what I hear?: parents and professionals working together for children with special needs. Livonia, MI: First Page Publications.

Guimont, Reva (2007), Exceptional Parents Unlimited, Fresno, CA. Personal communication.

Lindgren, C., Burke, M., Hainsworth, M., & Eakes, G. (1992). Chronic sorrow: a lifespan concept. Scholarly inquiry for nursing practice. 6, 27-40.

McHugh, M. (1999). Special Siblings: Growing up with someone with a disability. New York: Hyperion.

Mittelman, M. (2005) Taking care of the caregivers. Current Opinion in Psychiatry, 18(6):633-639.

Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 4, 190-193.

Potok, A. (2002). A matter of dignity: Changing the lives of the disabled. New York, Bantam.

Roos, S. (2002). Chronic sorrow: A living loss. New York: Routledge.

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