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There are more treatments today than ever before to help people with ongoing conditions manage their physical symptoms. But even with these medical advances, a diagnosis of myelodysplastic syndromes (MDS) may put you on an emotional roller coaster. Although you can’t change your diagnosis, there ways to manage your emotional responses to MDS and live life more fully. 

Journey to a New Normal

When you’re diagnosed with MDS, it can feel as though you’re on a journey into the unknown. With changes in your health, you may have a sense of loss or grief. These feelings may change and move in stages through denial, anger, and depression to acceptance. Each stage is an important step toward the goal of embracing your “new normal.” It’s important to remember that the process is different for everyone. You may even find that on a given day, you’re feeling emotions you thought you had “gotten past.” 

Get a Handle on Your Feelings

Getting a cancer diagnosis is often overwhelming. At first, you may not want to talk about it with friends and family members or even your doctors. It is as if by refusing to say the “C-word” you can make it go away. At this stage, it might be difficult to share your feelings with people who are closest to you. But keeping these feelings inside may only make you more anxious.

Rather than allowing anxious thoughts to march through your mind, get those feelings out in a written or audio journal. Eventually, you may be ready to share this journal with someone like a trusted friend, spiritual director, or therapist. They can listen without judgment and help you process what you’re going through.

In time, talking about your MDS may also help your broader circle of loved ones come to terms with your condition. Don’t assume your loved ones understand what a day in your life is like or how you’re feeling. They may be feeling helpless, too.

Find the Support You Need

Consider sharing specific ways those around you can help you. These can be things such as running errands, preparing meals, going with you on doctor visits, or helping with household chores. Or they could simply spend time with you watching TV. Not only will you get the support you need, you may also help your loved ones to better understand and accept your diagnosis.

Release Anger

As you talk about your MDS, you may have feelings of anger or rage at the disease. It may seem hard to come to terms with the unfairness of living with a uncurable condition. It’s important to  identify and work through your feelings so that you don’t take out your anger on yourself or others. 

There are many ways to release this mental and physical stress. Physical activity may help you “clear your head” of negative thoughts and lessen feelings of anxiety and depression. It can also help ease the fatigue that often comes with MDS. Think about trying 

  • Walking
  • Jogging
  • Cycling 
  • Meditation 
  • Yoga

Before you begin a new exercise routine, talk with your doctor about what activities are best for you.

Deal With Depression

As you move through your first feelings about your diagnosis, you may hit a point when you feel hopeless. Research shows that more than one-third of those diagnosed with MDS report feelings of anxiety and depression. 

When you’re feeling low, be good to yourself. Treat your body to nutritious foods, moderate exercise, and plenty of rest. Stay away from alcohol, which can make depression worse. Pamper yourself: Get a manicure or massage, listen to your favorite music, or watch an upbeat movie. 

Focus on activities that you can enjoy rather than on those you can no longer take part in. If you need to, look for ways to adapt activities to your current energy level and abilities. For example, you might not have the energy to play a fast-paced singles tennis match, but you might be able to join in a friendly round of pickleball.

When you’re feeling down, resist the urge to retreat from the world. Joining a support group specifically for people who have MDS can provide a community that truly understands what you are going through. There are MDS support groups online as well as in-person meetings sponsored by oncologists or cancer treatment centers.

Remember that feeling low or temporarily depressed is not same as clinical depression, which is a more severe and lasting mood disorder. This form of depression may be diagnosed when a person has one or more of the following symptoms:

  • A lack of interest or pleasure in doing things 
  • Feeling down, depressed, or hopeless
  • A hard time sleeping 
  • Decreased appetite
  • Tearfulness you can’t control

If you have these symptoms for more than 2 weeks and they’re impacting your daily life, talk to your doctor. They can suggest treatment options such as medication and counseling. 

Find Acceptance

Going through these emotional stages is a normal and healthy process. Once you’re able to accept your MDS diagnosis, you may be able to let go of negative emotions and focus on what’s positive in your life. Keeping a gratitude journal may help you find perspective when going through difficult health issues. You may be surprised at how much you have to be grateful for every day.

When you’ve made peace with your diagnosis, you may discover that you can now help others as well. Consider sharing your story in an MDS chatroom or becoming a mentor to someone newly diagnosed with MDS or another form of cancer.

Remember, the feelings you have after diagnosis with MDS aren’t a sign of weakness. They can be healthy responses that provide an important pathway for how you can best move forward in your life.

Show Sources

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MDS Foundation: “What is MDS,” “The Emotion of Living with MDS: Depression, Anxiety, Uncertainty and Sadness.”

American Cancer Society: “Physical Activity and the Person with Cancer,” “Psychosocial Support Options for People with Cancer,” “Impact of Attitudes and Feelings on Cancer.”

National Cancer Institute: “Emotions and Cancer,” “Grief (definition).”

Cancer Research UK: “Shock and denial.”

University of Washington: “The Stages of Grief: Accepting the Unacceptable.”

American Society of Clinical Oncology: “Myelodysplastic Syndromes – MDS: Coping with Treatment,” “Depression.”

Piedmont Healthcare: “Understanding and managing anger after a cancer diagnosis.”

Penn Medicine: “Therapeutic Writing and Journaling.”

Leukemia: “Health-related quality of life in lower-risk MDS patients compared with age- and sex-matched reference populations: a European LeukemiaNet study.”

Blood: “The Mental Health Burden and Quality of Life Impact of Myelodysplastic Syndromes in Patients and Their Caregivers.”

Mayo Clinic: “Clinical depression: What does that mean?”

Canadian Cancer Society: “Accepting the Diagnosis.”

Journal of Cancer Education: “Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial.”