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Coping with Grief and Loss of Epilepsy

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By Editorial Team

3 min read

Reviewed by: HU Medical Review Board | Last reviewed: November 2021

Most people think of grief as something that happens after a person or pet passes away. People who have not lived through helping a loved one with a chronic illness may not realize that grief can take place long before someone dies.

Caregiving for someone with epilepsy can be an emotional rollercoaster. You may mourn the loss of your loved one’s independence, personality changes, or mental decline. Witnessing their changing health may trigger many emotions that challenge your mental and emotional health.

You may move through many stages of grief, including:1-5

  • Grief at the time of their diagnosis
  • Grief over the future
  • Grief after death

It is important to be aware of each stage. Seek help as you and your loved one move through this illness together.

Coping with the diagnosis

It is normal to feel shocked or sad when a loved one is diagnosed with epilepsy. Anxiety and grief about the future are also common. Diagnosis may be delayed from when symptoms first appear. This can add to feelings of shock, sadness, and frustration.1,5

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There is no wrong way to feel or cope with your emotions. The most important thing is to find support and take care of your mental health.

Managing your grief can be overwhelming. You may be mourning the way things used to be while also learning to manage your person’s healthcare. Some healthy ways to cope include:1,5

  • Learn more about epilepsy and its treatments
  • Ask your epilepsy care team questions
  • Ask for help from family and friends
  • Join an epilepsy support group
  • Talk to a therapist, counselor, or clergy member
  • Maintain hobbies and outside interests
  • Set aside time to maintain relationships

Consider talking to a counselor about your coping mechanisms.

Anticipatory grief and anxiety

Anticipatory grief is grief about a loss that has not happened yet. As a caregiver, you may worry about your loved one’s eventual loss of independence or mental decline. You may also worry about sudden unexpected death in epilepsy (SUDEP). Anticipatory grief can increase anxiety and depression.

Common signs of anticipatory grief include:3

  • Sadness
  • Anger or resentment
  • Loneliness
  • Anxiety and depression
  • Guilt
  • Fear
  • Fatigue
  • Desire to talk
  • Emotional numbness
  • Forgetfulness

Anticipatory grief often feels isolating. Try to remember you are not alone, and support is available.

If you have these symptoms, talk to someone you trust about your feelings. You can also try healthy coping methods such as meditating, deep breathing, exercising, and socializing.

Grief after death of a loved one

Death due to epilepsy may be sudden or unexpected. This suddenness can complicate grief for caregivers and loved ones. Grief following SUDEP can be severe and long-term. Mental support can help you find healthy ways to cope.1-5

The grieving process is different for everyone. There is no wrong way to grieve the loss of a loved one. Let yourself feel whatever emotions of grief you are experiencing. Let your loved ones feel their own emotions. Ask for help and support when you need it.

Some ways people cope with grief include:4,5

  • Expressing emotions by writing, listening to music, or talking with others
  • Using other hobbies or interests as a distraction
  • Finding healthy ways to remember and celebrate your loved one
  • Finding supportive people to talk to but giving yourself space not to talk if you do not want to
  • Advocating or fundraising for epilepsy research
  • Going back to work only when you feel ready

Holidays and other special occasions can be especially difficult. Every family is different in how they cope during holiday gatherings. Some families create new holiday traditions to celebrate the life of their loved one. This can be something the family does together to make a positive impact on your or someone else’s life. Some families use holiday gatherings to keep memories of their loved one alive.

Learning to cope with the emotional stress of caregiving can help keep you healthy. Everybody deals with stress, anxiety, and grief in their own way. It is important to find the path that works for you.