Anticipatory Grief in the Brain Tumor Community

When you or a loved one is diagnosed with a brain tumor, everything can feel like it’s been turned upside down. The future you imagined — your plans, routines, hopes, even your identity — suddenly shifts. That overwhelming sense of loss, fear, and sadness that begins when you or a loved one has been diagnosed is called anticipatory grief.

“When Steven was diagnosed, I didn’t know anything about anticipatory grief,” said Holly Gainsboro, a certified Grief Support Specialist and Grief Educator who facilitates the National Brain Tumor Society’s Grief Support Conversations. “All I knew was the rug was pulled out from under us as a family, and certainly for me. Now I’m a caregiver, what does that look like, and what does this mean? What’s going to happen to him, what’s gonna happen to us, what’s going to happen to my children? That’s all anticipatory grief. It’s this anticipation of what it’s all going to look like, but it’s also grieving what was and the fear of what is coming.”

Anticipatory grief is the emotional reaction we feel before a loss happens. While many people think of grief only in relation to death, it can arise from many types of loss — the loss of health, independence, cognitive function, relationships, employment, and more. It’s a common emotion after a brain tumor diagnosis, yet it can look different from person to person.

Can Patients Experience Anticipatory Grief?

Anyone impacted by a brain tumor — patients, spouses, parents, children, friends, and other family members — can experience anticipatory grief. While it may look different for everyone, it’s equally real and valid.

“People who are diagnosed with this disease are also grieving,” Holly shared. “They’re grieving the change in their health. They’re grieving the changes in their body. They’re grieving for their future.”

Examples of what anticipatory grief might look like in a newly diagnosed person include:

• Grieving the unknown about what life is going to look like after brain surgery
• Wondering whether you’ll be able to see your children grow up
• Feeling like you’re not done yet 
• Worrying about being a burden to your loved ones

“Some of the grief is that my body is betraying me,” Holly said. “How can my body do this to me? How did this happen? Why did this happen to me? What is this going to look like for me?”

How to Cope With Anticipatory Grief

While anticipatory grief is painful and complex, there are ways to support yourself during moments of uncertainty and overwhelm.

1. Feel Your Feelings

You may hear people say “stay strong” or “just be positive,” but anticipatory grief doesn’t go away by ignoring it. Your feelings deserve space.

“The one thing I tell people who are grieving is just to feel those feelings,” Holly said. “There’s no right or wrong way to feel. There’s no right or wrong way to grieve. There’s no script for it. Everybody’s grief is unique to them.”

A positive attitude can be powerful, but it’s important to acknowledge that it’s not possible to be positive all the time, and it’s normal to experience a wide range of emotions. It’s OK to laugh, cry, or get angry. 

“Everybody wants their person to be upbeat, but you don’t want to do this toxic positivity thing to ourselves or others,” Holly said. “It invalidates your pain, fears, and grief.”

Instead, ask yourself, “How are you really doing in this moment? What is this like for you in this moment?”

2. Take a Moment for Yourself

When grief and anxiety feel overwhelming, a brief pause can help reset your nervous system. Holly suggests trying to:

• Step outside and notice what you see, hear, and feel
• Do box breathing: Breathe in for four seconds, hold for four, breathe out for four, hold for four
• Light a candle and stare at the flame for a couple of minutes
• Use colored pencils that reflect your mood, whether it’s black, brown, and gray, or brighter colors
• Place one hand on each arm and gently stroke up and down
• Breathe in your name and breathe out what’s causing anxiety
• Explore self-holding techniques through somatic exercises

“The aim is to get you outside of your head and help you regulate,” Holly said. “You get to take a respite from it, even if it’s a few minutes.”

Often, people living with brain tumors and their loved ones express how they don’t have time to meditate or journal.

“Go to the bathroom, close the door, lock the door, tell your kids I’m in the bathroom, which I know is when they love to bother us,” Holly said. “Either get out your journal, or take one minute to just breathe. Journal about how you feel, even if it’s just for a second, ‘I feel like crap. I feel scared.’ Really name and notice your feelings.”

3. Create a Regulation Toolbox

When you experience anxiety paired with your anticipatory grief, it’s easy to forget what helps. Holly encourages people to make a list of tools that have helped calm their nervous system in the past and keep it somewhere visible. You can then quickly take action to help ground yourself in times of overwhelm.

Your regulation toolbox might include:

• Taking a shower or bath
• Listening to music or a calming playlist
• Dancing, stretching, or jumping in place
• Going for a walk, even just to the mailbox
• Watching a funny or comforting show
• Placing your hands over your chest while repeating a calming phrase like “I’m safe,” or  “I’m OK.”
• Using a weighted blanket or cuddling your pet
• Journaling for even 30 seconds

4. Write Down Your Control Circle

As Holly says, “anxiety from anticipatory grief is this feeling that you don’t have control.” Often, patients and care partners feel like they don’t have control over anything. Holly recommends the following exercise to regain a sense of agency in these moments.

Take a piece of paper and put a big circle in the middle of the page. Inside your circle, write all the things you have control over, and then write what you don’t have control over outside of the circle. 

Inside the Circle Examples – I Can Control: 

• Choosing my clothes
• Brushing my teeth
• Picking a show to watch
• Choosing my response
• Selecting what to eat
• How I talk to myself

Outside the Circle Examples – I Can’t Control: 

• My diagnosis or my person’s diagnosis
• Whether the treatment will work
• How others react or behave

“When you can focus on what you can control, that eases up some of that anxiety and can feel empowering,” Holly said. “Try to let go of what you can’t control, so that you can zero in on what you can control.”

5. Seek Support

Anticipatory grief can be incredibly isolating, but you don’t have to go through it alone.  Support can take many forms:

• Join a support group. Sometimes just hearing “me too” from someone who truly gets it can make all the difference.
• Work with a therapist, grief coach, or grief support specialist. A trained professional can help you process complex feelings and build coping strategies.
• Find connection through the National Brain Tumor Society. You can find other community members who understand.

You’re Not Alone

If you’re experiencing anticipatory grief, know that what you’re feeling is normal. You’re allowed to feel overwhelmed. You’re allowed to seek support. 

And keep in mind that anticipatory grief doesn’t always end when someone dies. It can resurface around anniversaries, birthdays, or other significant dates. 

“There’s anticipatory grief because you have the anticipation of what the day is going to feel like,” Holly shared. “Sometimes the anticipation is worse than the day itself.”

Marking these days ahead of time — and planning how you’ll take care of yourself — can help.

TAGGED WITH: grief support

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