Mental Health & MDS: Let's Talk About It

Mental health is often not discussed openly due to negative stereotypes. Some struggle with mental health at an early age. Others may experience mental and emotional health and wellness their entire lives until they experience a traumatic health event such as a cancer diagnosis.

Diagnosis and treatment of MDS can trigger challenges that didn’t exist before such as anxiety and depression. These may be exacerbated by MDS medication or treatment (stem cell transplant, failure of treatment, extreme side effects of treatment, etc.). 

These challenges are REAL and need to be recognized and treated. They are not a sign of weakness. They can often be difficult to understand and accept, especially if you had previously been healthy (both physically and mentally) and not had to deal with these challenges before MDS.

If you are experiencing feelings of depression:

• Persistent sad, anxious, or “empty” mood
• Feelings of hopelessness, or pessimism
• Irritability
• Feelings of guilt, worthlessness, or helplessness
• Loss of interest or pleasure in hobbies and activities
• Decreased energy or fatigue
• Moving or talking more slowly
• Feeling restless or having trouble sitting still
• Difficulty concentrating, remembering, or making decisions
• Difficulty sleeping, early-morning awakening, or oversleeping
• Appetite and/or weight changes
• Thoughts of death or suicide, or suicide attempts

or anxiety:

• Feeling restless, wound-up, or on-edge
• Being easily fatigued
• Having difficulty concentrating; mind going blank
• Being irritable
• Having muscle tension
• Difficulty controlling feelings of worry
• Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep

It is important to share these difficulties with your MDS care team (MDS specialist, nurse practitioner, nurse or social worker). Do not be afraid to speak up. Many of these symptoms are also side effects of treatment and medication, which can make it difficult to manage on your own. Discussing these concerns and their disruption in your daily life with your care team can help determine if additional supports are needed. If so, they can refer you to a specialist who can provide essential treatment, resources and support. You do not have to do it alone.

The pandemic and its impact on our lives is placing additional mental and emotional stress. Recently, Mayo Clinic physicians reminded us that as MDS patients, caregivers, and family members cope with the pressures of the pandemic, it is “critical” that they focus on their own mental health. Should there be indications of overwhelming stress, the authors strongly advised following the advice of the Suicide Prevention Hotline.

Once you have addressed these needs with a professional, another source of comfort and relief may be talking to and hearing from others who can relate and understand. 

We also have a new journaling tool on the HealthTree for MDS website. Journaling has been clinically proven to reduce stress, anxiety, improve mood and increase emotional regulation. The journaling feature allows patients and caregivers to capture stories in video, audio or text and share journal entries by email or social media. Click HERE to start journaling!