Coping With The Diagnosis

Coping with an ependymoma diagnosis can feel overwhelming. We can’t always control everything that happens to us but we can decide how we let unexpected news affect our life moving forward.

The following coping mechanisms can help you cope with your diagnosis in a healthy way, at your own pace.


Communication is key and can’t be expressed enough. This is a very difficult time for everyone involved. Learn how to communicate with your healthcare team to ensure your needs are met. The more honest and open you are, the more your physical, psychological and physiological needs can be managed. Sometimes, there is an expectation that physicians should know what you’re experiencing but that is not always the case. Everyone is unique, so communicate your needs so your treatment and care can be tailored to you.

Keep a record of care, writing down symptoms and side effects you are experiencing between appointments and share this with your healthcare team. Communicating with family and friends about a spinal or brain tumor is painful and difficult. Sharing with supportive people will help you move forward. You decide how much information they should know, but be honest and decide who you feel comfortable being honest with. Those close to you should be familiar with your course of treatment, so they can understand what you will be going through, both physically and emotionally.

Keep a Journal

Journaling can be helpful to express your thoughts and feelings when they present themselves. The positive thing about this is, it’s your own personal record of your journey.  Journaling is cathartic and helps you release any thoughts you may be having instead of letting them build up. The last thing you want is everything to build up inside and not have a way to deal with your emotions. Sometimes when this happens, you explode in unexpected situations or towards innocent bystanders (spouse, children, healthcare team, friends, etc). Another good thing about having a journal is it gives you time to think about steps you can take to resolve a concern that has been plaguing you.

Be Present

During this time, you can be overwhelmed with everything going on and it can be difficult to focus on one issue at a time. Learn to be mindful and present in your current state. Take each day in and focus on your senses (sight, hearing, touch, smell, taste) in each moment. This reduces negative thoughts and things you can’t control and keeps you present in your current situation so you are able to enjoy the moment you are in.

Find Balance in Your Life

Balance is a key component in maintaining stability. Prior to being diagnosed, you possibly had a routine. Continue to have a routine while coping with your diagnosis. Don’t over exert yourself and do things within your physical abilities. Have a life that you can be happy with outside of appointments and treatment visits. One of the things that occurs when dealing with any type of life changing news is sometimes we tend to shut down or isolate, not knowing how to deal with the news and having concerns over our future. Having a schedule or routine gives you a purpose. It motivates you to do what you can, when you can and a sense of hope.

Learn Coping Strategies

Learn ways to deal with unexpected news throughout this process, from when you initially get diagnosed to receiving treatment, to being in follow-up appointments after completing treatment. Incorporate stress-relieving techniques to use to ease your anxiety about upcoming appointments or treatment. Learn to practice these techniques that you’re able to incorporate in your daily routine. Try guided imagery, progressive muscle relaxation or diaphragmatic breathing. Seek out the guidance of a counselor or therapist who can help you implement more techniques into your daily routine.

Have Your Faith

If this was an important part of your life prior to diagnosis, continue to restore or maintain your faith in a higher power and look to him/her for the guidance that you are seeking.

Set Goals

Set realistic goals for yourself. Learn to breakdown a big goal into smaller compartments to achieve it.

Use the SMART technique to set your goals:

  • Make your goal Specific
  • How is it going to be Measured?
  • Is it Attainable?
  • Be Realistic about being able to accomplish this goal
  • Timely – How long will you give yourself to complete your goal?

One of the most important lessons from goal setting is rewarding yourself throughout this process. If you were able to get out of bed, walk to the mailbox, or wiggle some of your fingers today, be proud of that. We tend to wait until we have attained a big goal before fully celebrating our accomplishments. You can also contact us if you have a specific question.

More ways to care for yourself and family

Be Your Own Advocate

Hear from ependymoma survivor, Sarah, as she shares three tips to help guide you through your ependymoma journey.

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