Coping and Grief with SMA

Caregiving for a loved one with spinal muscular atrophy (SMA) can be an emotional rollercoaster. It is normal to feel shocked or sad when a family member is diagnosed with SMA.

Anxiety and grief about the future are also common. As your loved one’s symptoms change, you may experience different emotions. These feelings can worsen your mental and emotional health.

Learning to cope with the emotional challenges of caregiving can help you stay healthy. Everybody copes with stress, anxiety, and grief in their own way.

It is important to find what activities and support networks help you. Consider talking to a therapist or counselor about coping mechanisms.

Coping with diagnosis

When your child or loved one receives an SMA diagnosis, you may experience many emotions. Diagnosis may be delayed from when symptoms first appear. This can add to feelings of shock, sadness, and frustration.

There is no wrong way to feel or cope with your emotions. The most important thing is to find support and to take care of your mental health.1,2

Coping with the diagnosis while learning to manage your child’s healthcare can be overwhelming. Ways to cope with the diagnosis include:3,4

  • Learn about SMA and its treatments
  • Ask your doctor questions
  • Ask for help from family and friends
  • Join an SMA support group
  • Talk to a genetic counselor about the risk of other family members having SMA
  • Talk to a therapist or counselor
  • Find healthy hobbies and interests
  • Set time for your personal relationships

Anticipatory grief and anxiety

Anticipatory grief is grief about a loss that has not happened yet. For caregivers of people with SMA, this may be a loss of walking ability and independence.

It may also include worries about death. Anticipatory grief can increase anxiety and depression.5,6

A common sign of anticipatory grief is feeling angry or afraid without knowing why. Emotions caused by anxiety about the future can be difficult to understand.

This sometimes makes anticipatory grief feel isolating. But you are not alone, and there are support networks to help keep you connected.5

Anticipatory grief can contribute to mental health problems like anxiety and depression. Symptoms of anxiety and depression include:5

  • Often feeling nervous or sad
  • Physical symptoms such as sweating, rapid breathing, headache, and fatigue
  • Trouble concentrating or sleeping
  • Irritability
  • Avoiding activities or lack of interest in activities you once enjoyed
  • Lack of motivation to care for yourself
  • Thoughts of self-harm

If you are experiencing these symptoms, ask for help from family, friends, or supportive people. You may also benefit from talking to a therapist or counselor. They can help identify what is causing anxiety and develop ways to cope. Some common coping methods include meditating, exercising, and socializing.

Grief after the death of a loved one

Children with type 1 SMA usually have a life expectancy of under 2 years. People with type 2 SMA have a life expectancy of 20 to 40 years.

Grief concerning end-of-life care and death is common for parents and other caregivers. Grief following a child’s death can be severe and long-term. Also, families and doctors often overlook siblings’ grief. Psychological support for parents and siblings can help families find healthy ways to cope.6,7

Talk to your doctors ahead of time about end-of-life care options. These are difficult and personal conversations. But making sure your wishes are fulfilled can give some comfort during a difficult time. For example, some parents prefer their child to die at home with their family. Some parents prefer their child to die in a hospital.8,9

The grieving process is different for everyone. There is no wrong way to grieve the loss of a child or 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 parents and family members cope with grief include:10

  • 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 the 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 SMA 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 ones. This can be something the family does together to positively impact your own or someone else’s life. Some families use holiday gatherings to keep memories of their loved ones alive.10

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Written by: Matt Zajac | Last reviewed: August 2021