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Grieving the Life You Thought You'd Live After an AML Diagnosis
Posted: Oct 14, 2022
Grieving the Life You Thought You'd Live After an AML Diagnosis  image

You hear the words "acute myeloid leukemia" as you sit there in the doctor's office. The life that you lived before that moment is gone. You have been thrown into a new world with new words, abbreviations, appointments, treatments and side effects. In the beginning, it's hard to process. Between learning about the disease, deciding on induction treatment, and getting to know your doctor, life becomes a roller coaster of meetings and appointments. But then there comes a time where it hits you: your life is different. You have just been through a traumatic diagnosis. And you, in your own way, begin to grieve.  

What is Grief? 

Grief is universal. At some point in life, everyone will have at least one encounter with grief. It can come from any change that alters life as you know it (i.e. an AML diagnosis of you or your loved one). 

Grief is also very personal. It’s not very neat or linear. It doesn’t follow any timelines or schedules. These phases of grief will come throughout the AML journey you and your loved one are experiencing. It may be at the stage of initial diagnosis, during complete response, or at the moment of relapse. 

Everyone grieves differently. If you don’t cry, it doesn’t mean that you aren’t grieving. Crying is a normal response to sadness, but it’s not the only one. Those who don’t cry may feel the pain just as deeply as others. They may simply have other ways of showing it. If you do cry as a part of your grief, it doesn’t mean that you are weak. 

You don’t have to “be strong” in the face of losing the life you thought you were going to have with your loved one. You don’t need to “protect” your family and friends by putting on a brave front when telling them about what you are going through, if you choose to share. 

Stages of Grief

There are some commonalities in the stages and perhaps the order of feelings experienced during grief. According to the Kübler-Ross model of grief, there are five stages.

They are: 

  1. Denial 
  2. Anger 
  3. Bargaining 
  4. Depression 
  5. Acceptance 

In this article, I will discuss each of these stages and provide examples of what they could look like as you grieve the life you thought you would live after an AML diagnosis. I share these examples with you not to discourage you but to acknowledge that if any of these examples resonate with you, it's a normal reaction to think that way. The issue comes when someone stays in one of these stages of grief and becomes unable to move on from that stage over time.  

Denial 

Grief is an overwhelming emotion. It’s not unusual to respond to strong and often sudden feelings by pretending the change is not happening. For example, it could be hard for many caregivers to accept the diagnosis of their loved one, or deny the severity of the illness. 

Denying it gives the person time to more gradually absorb the news and begin to process it. It’s a common defense mechanism and helps numb the intensity of the situation. 

Many try to stay in this phase to avoid the overwhelming feelings that come as one moves out of the denial stage and emotions (including sorrow) begin to rise. 

Examples: 

“This isn’t happening to us. The results are wrong.” 

“It’s not a serious condition. We don’t need to do anything about it.” 

“The doctor will call us back and say he got us mixed up with another patient, there is no way that Audrey is relapsing.” 

“Things will get back to normal soon.”

It is important to note that denial is completely refusing to deal with the problem at hand. Optimism is something entirely different and should not be confused with denial (i.e. It’s not a death sentence, we can fight this together.)

Anger 

The second stage of grief is known as anger. 

Anger is a natural feeling that can follow denial. It’s OK to feel anger when you’re grieving. This is an intimate process and you have the right to experience it fully.

 
“Most people feel both sadness and anger during the grieving process, but for many people, anger is such a strong emotion that it overshadows other emotions such as sadness.” - Brandon Santan, Ph.D., board-certified counselor


Some people may be more prone to anger during grieving due to genetic, personality, or experiential factors. 

Examples: 

“Why is this happening to me? How could this happen to me?” 

“Why didn’t the doctors catch this before?”

“How was the other misdiagnosis possible?” 

“Why did no one ever tell me about AML and what to watch for?” 

“Why didn’t I recognize the symptoms in my loved one sooner?” 

“What am I supposed to do with my life now?” 

“There goes our retirement savings. Life will never be the same again.” 

Bargaining 

The third stage of grief is known as bargaining. 

During the grief of processing an AML diagnosis, you may feel vulnerable and helpless. In those moments of intense emotions, it’s not uncommon to look for ways to regain control or to want to feel like you can affect the outcome of an event. In the bargaining stage of grief, you may find yourself creating a lot of “what if” and “if only” statements. 

It’s also not uncommon for religious individuals to try to make a deal or promise to God or a higher power in return for healing or relief. Bargaining is a line of defense against the emotions of grief. It helps you postpone the sadness, confusion, or hurt. 

Examples: 

Here are some bargaining examples in AML journies that people have shared with me: 

“If only we had eaten more healthily, this wouldn’t have happened to him.” 

“What if I had encouraged her to exercise more, would this have happened?” 

“If only we had gone to the doctor sooner, we could have stopped this.” 

“If I learn everything that I can about AML, I can save their life.” 

“What if we hadn’t lived in that neighborhood ? Would things have been different?”

Depression 

The fourth stage of grief is depression. It's important to note that there is a distinct difference between "grief depression" and diagnosed clinical depression, which I will also discuss. It is not uncommon to have people get stuck in this stage and have a hard time leaving it. However, let’s learn about the realities and differences in this complicated stage of grief. 

Anger and bargaining can feel like very active, loud stages of grief. On the other hand, depression can feel quieter. 

In the early stages of the diagnosis or relapse, you may be running from the emotions, or unable to process them due to the load that has been handed to you. By this point in your grief, however, you may be able to embrace and work through them in a healthier manner. You may also choose to isolate yourself from others in order to fully cope with the significant change that has happened to you and your family. 

Depression may feel like the inevitable landing point of any loss. However, if you feel stuck here or can’t seem to move past this stage of grief, you should talk with a mental health expert. The social worker at your AML specialty center or cancer resource center should direct you to proper care. A therapist can help you work through this period of coping. 

Clinical depression is a serious illness that affects the body, mood, thoughts, and behavior. It affects the way a person eats, sleeps, and thinks. If you have persistent, sad, anxious, or empty moods, are sleeping too much or too little, have persistent guilty, hopeless or worthless feelings, or significant fatigue or loss of energy (or other depression symptoms), please seek appropriate help. You matter!

Symptoms and Examples: 

Symptoms of depression can vary from person to person, but anyone who has been experiencing five or more of the following symptoms for more than two weeks should see their doctor: 

  • Persistent, sad, anxious, or empty mood 
  • Sleeping too much or too little 
  • Change in appetite resulting in weight gain or loss 
  • Loss of pleasure and interest in activities once enjoyed 
  • Irritability, restlessness
  • Crying too often or too much 
  • Aches and pains that don’t go away when treated 
  • Difficulty concentrating, remembering, or making decisions
  • Fatigue or loss of energy 
  • Feeling guilty, hopeless, or worthless 
  • Thoughts of death or suicide 

And though sensitive, here are some anonymous examples of grief and depression that I have heard from people dear to me in the AML community: 

“Our life has come to a terrible end.” 

“I will never be the same again.” 

“I am too overwhelmed. I can’t do this anymore.” 

“I can’t keep this up, it might be time for me to give up.” 

If you or your loved one is having thoughts of suicide, please contact the National Suicide Hotline at 988 or visit their website here: https://988lifeline.org/

You are worth getting the help that you need! 

Acceptance 

The fifth and final stage of grief is acceptance. 

Acceptance is not necessarily a happy or uplifting stage of grief. It doesn’t mean that you’ve moved past grieving the life that you thought you’d have with your loved one. It does, however, mean that you’ve accepted the diagnosis or relapse or new life activities and habits, and have come to understand what it means if your life now. 

You may feel very different in this stage. That’s entirely expected. You’ve had a major change in your life, and that upends the way you feel about many things (for better or for worse!) 

Look to acceptance as a way to see that there may be more good days than bad. There may still be bad, and that’s ok. 

Examples: 

“Life may not be the same, but it’s still wonderful.” 

“There are so many things that we are still able to do.”

“This diagnosis may affect us but it does not have to define us.” 

“What opportunities do I have to serve others in my same position?” 

“I am so fortunate to have had so many healthy years with my loved ones.”

“There are still so many memories yet to be made.”

As you can see, this is the stage where we all want to be, a place where hope and optimism (along with a healthy dose of realism) can exist. 

Is It Possible to Repeat The Stages of Grief? 

No one goes through the stages of grief in a linear way. You may have ups and downs and go from one stage to another, and then circle back. 

Additionally, not everyone will experience all stages of grief, and you may not go through them in order. For example, you may begin coping with your pain in the bargaining stage and find yourself in anger or denial next. 

A Philosopher's Thought on Grief 

Philosopher Cornel West shares,

“Grief is part of the human experience. It’s recognizing diminishment in your life while simultaneously recognizing the opportunity grief gives you of empowerment...strangely enough, grief can give you something to be thankful for in every circumstance. You can acknowledge your pain and still see beauty.”

Resources: 

Anger and Grief: https://psychcentral.com/health/grief-and-anger#why-am-i-angry
5 Stages of Grief: https://www.healthline.com/health/stages-of-grief#5-stages
Caregiver Toolbox: https://gwaar.org/family-caregiver-support-group-toolkit_2
National Suicide Line: https://988lifeline.org/
Hope, Optimism, Love, and Loss with Cornel West: https://www.masterclass.com/classes/cornel-west-teaches-philosophy/chapters/hope-and-optimism-love-and-loss

The author Audrey Burton-Bethke

about the author
Audrey Burton-Bethke

Audrey joined the HealthTree Foundation as a Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.

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