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Supporting Your Partner Through Chronic Grief

When you’re a parent caring for a child with disabilities, you’re likely to experience many emotions that may be different from your partner’s. Further, you may have difficulty balancing feeling joy and gratitude at the same time as sadness and loss.

Feeling loss or grief is natural, but some parents may feel guilty for allowing themselves to grieve at all. For example, parents often feel sad or disappointed when they think about common life events their child may never experience, such as participating in school events with friends, moving out of the house, or having children. Parents may believe they shouldn’t feel loss but rather that they should simply be grateful their child is alive. The grief that you experience as a parent of a child who has special needs can be complicated. If it goes unrecognized by a significant other, you may feel isolated and misunderstood.

Initial Grief and Chronic Sorrow

When you and your partner first learned of your child’s medical condition, you likely went through an initial period of intense sadness and grief, which may have felt shocking and overwhelming. This acute grief period can be very stressful for couples.

But grieving typically doesn’t end with the initial shock. Parent caregivers then begin to experience a different type of long-term grieving process.

Simon Olshansky coined the term chronic sorrow to describe the continuing painful emotions parents of children with disabilities experience. Throughout your child’s life, there may be no end to events or experiences that will cause more grief or retrigger old feelings of grief. For example, reminders of the loss of having a healthy, typically developing child can surface at your child’s birthdays, at their sibling’s birthdays, with new illnesses or symptoms, or during interactions with other people.

Six States of Grief

According to psychologist Ken Moses, parents of children with disabilities regularly cycle through six states of grief of painful emotions: denial, anxiety, fear, guilt, depression, and anger.

These states are cyclical, nonsequential, and unpredictable, and you can be in more than one state at the same time. Throughout this process, parents may experience acceptance of some aspects of their child’s condition.

Denial

At different times throughout your child’s life, you and your partner may find yourselves in denial. Worsening of your child’s symptoms or an additional diagnosis might make you feel emotionally numb or like your situation isn’t real. You might also avoid the subject or reminders of your circumstances.

Anxiety

It’s natural that you would experience times of anxiety about your child’s well-being and future, especially when new or upsetting events arise. Unanswered questions about your child’s symptoms, worry that you will not be able to help them, or unknowns about their future level of independence are a few serious concerns that can cause anxiety.

Fear

You may also experience times of fear or even terror. Wondering who will care for your child if something happens to you, the fear of losing your child, or not knowing how long they will live, for example, may cause you distress.

Guilt

Feelings of guilt are common among parent-caregivers. You may feel a sense of guilt and blame yourself for your child’s condition. You may feel guilty for your thoughts and feelings if you wonder what life might have been like if your child hadn’t been diagnosed or question if your child might have been better off if they hadn’t survived.

Depression

You or your partner may feel depressed. For example, imagining opportunities your child won’t experience, watching them struggle or feel pain, or thinking about the limitations of their life can lower your mood.

Anger

At times, your loss may cause you to feel angry, resentful, or bitter toward others, including healthcare professionals, yourself, your partner, and even your child. You might blame healthcare professionals or your spouse for your child’s condition, or you may direct anger inward because you believe you caused your child’s disabilities. The physical and emotional strain your child’s care needs create might even cause you to resent your child.

Coping with Loss as a Couple

Understanding and managing chronic sorrow can be complicated, especially for couples. Partners typically experience and manage their chronic sorrow in different ways, and misunderstanding each other’s grief process can drive a wedge between you. One of you may feel regular, intense waves of grief, while the other may feel small waves of grief only occasionally. You may be in different states of grief at the same time, which can be confusing and frustrating.

To grow closer as a couple through your chronic sorrow, first, acknowledge and accept that your grief experiences may be very different, and that’s to be expected.

Man and Woman hugging, consoling each other
Credit: iStock | dikushin

Second, allow yourselves to actively experience your emotions—both personally and as a couple. If either or both of you become stuck in denial, for example, you may have difficulty moving forward as a couple. Studies show that dads often remain in denial for a longer period of time than moms, which can breed conflict. Growing in your ability to support one another through the emotional challenges of caring for your child with disabilities requires both of you to process your own personal grief as you continue to experience the different states of chronic sorrow.

Tips to Understand and Support Your Partner

The inability to fully understand your partner’s grief experiences can either draw you closer or create emotional distance between you. Failing to attempt to understand and support your partner’s grief experience might cause them to feel uncared for and they may emotionally withdraw from you. However, intentionally making an effort to learn how to support your partner through their painful process can create deeper intimacy between you.

You will never fully understand what it is like for your partner. What matters is expressing that you want to understand and communicate support to each other. Through growing in this process, you can find new strength in your relationship. Here are steps that can help you understand and support your partner in more meaningful ways:

1. Share with each other what your journey of chronic sorrow feels like by taking turns asking and answering questions about grief. You can start with one per week when you have some time or set aside some time to address multiple questions in the same conversation. Examples of questions include:

  • How often do you experience grief?
  • How would you describe the intensity of your physical, mental, and emotional reactions?
  • What situations, memories, or events trigger your sorrow?
  • What does each state of sorrow feel like in your body, thoughts, and emotions?
  • How would you describe how you respond internally, physically, behaviorally, and verbally?

It might help to listen first, then jot down some notes about your partner’s answers that you find helpful.

2. Validate one another’s feelings and experiences.

Even though you might not be able to understand or relate, express that you are listening and you care. Reflect back what your partner is saying by repeating the essence of what they said and the feeling words they used. For example, you could reply with a statement like: “It sounds like the doctor’s appointment was hard, and you are feeling frustrated.” Allow them to respond to confirm if you understand them. Then validate their emotions and experiences by saying something like: “I’m sorry the appointment was so frustrating, and you are feeling unheard and helpless. How can I help?”

3. Learn each other’s grief triggers.

As your partner identifies the memories, events, and experiences that trigger their chronic sorrow, take note. In the weeks and months ahead, become aware of those days that seem to bring up strong emotions for your partner. For example, if certain movies or TV shows trigger your partner, consider not watching them or similar shows.

4. Discuss how you can support one another both emotionally and practically.

Once you know your partner’s triggers, share practical ways you can support each other when your chronic sorrow is triggered. For example, if your partner is taking your child to a doctor’s appointment that might trigger feelings of grief, ask how you can be supportive. You might offer to go with them or call before and afterward to let them share their emotions. Identify concrete ways you can support your partner and listen for ways you can let them know you care.

Tips to Maintain and Grow a Healthy Relationship

Coping with chronic sorrow together takes a combination of supporting each other in grieving and caring for yourself and your own mental health. Here are tips to help improve the health of your relationship:

1. Grieve together.

One of you may not be sad or angry about a certain situation, or you may be in different states of chronic sorrow. It may feel uncomfortable, messy, and easy to avoid, but expressing understanding and support, holding each other, and crying together will strengthen your bond and deepen your intimacy. Allow yourselves to feel all of your different painful emotions. Then, you will be better able to experience positive emotions together, also.

2. Monitor your mental health.

The healthier you both are mentally and emotionally, the healthier your relationship will be. Chronic sorrow and caregiving stress increase your risk of developing a mental health disorder. In fact, approximately one in three parent caregivers meet the clinical threshold for moderate depression and anxiety. If you have any concerns about your mental and emotional health, seek individual professional treatment as soon as possible. And if you notice any concerning signs in your partner, encourage them to go for counseling.

3. Find ways to destress together.

Part of managing chronic sorrow is also coping with stress. Physical activity has been proven to have significant benefits for reducing stress levels in your body and improving mood and mental health. Try to walk outside together regularly, if possible. The time together will give you a chance to talk, and the physical activity will help you reduce the intensity of your emotions. Laugh together by watching a comedy or sharing a funny video. If feasible, go for a couple’s massage or give each other a foot or hand massage at home, or relax in a hot shower or bath together. You can also try taking turns engaging in your partner’s favorite activities as a couple.

Learning to support one another in meaningful ways through your loss and grief will draw you closer as a couple, bring you more joy in your life together, and improve the health of your family.


References and Further Reading

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