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The Mental Battle of Myeloma
The Mental Battle of Myeloma image
The Mental Battle of Myeloma
Posted May 17, 2022

COVID has created a sense of low-level brewing anxiety in me that I have never experienced before.   Current events add to this with inflation, ongoing war in Ukraine, and supply chain issues all contribute to feeling overwhelmed with many unknowns. The unknown often creates fear.

Living with myeloma is one of the greatest unknowns.  You don’t know exactly how you’ll respond to treatment, what side effects you may have, or how long the treatment will be effective  You don’t know if your insurance coverage will change and impact the cost of your treatment, or if the financial assistance program will have funds when it is time for you to re-apply.

Myeloma causes deeper and even more personal unknowns - will you be around when your child graduates from high school, gets married or to see grandchildren? Will you be able to enjoy retirement with your loved ones?

When my husband was diagnosed with myeloma seven years ago at the age of 39, a colleague connected us to her friend who had myeloma.  He spoke in length with my husband and gave him a piece of advice that has guided us through the unknowns the past seven years.

He told him there was a choice that he must make on a daily basis.  My husband would have to decide which one of these thoughts would be allowed to occupy his mind for the day.  

  1. Fear and doubt OR
  2. Faith and hope

Each one of these types of thoughts would come with profound consequences.  

Anyone with myeloma (and their family) knows there is plenty of fear and doubt to go around. We found when we focused on those things we sunk deeper in despair, with compounding fear and even more doubt.

However, when we worked to focus on even an ounce of faith it generated more hope.  We started small. We did our research, found a qualified myeloma specialist and had faith that the recommended treatment would work.  As we moved along we continued to research, discuss options with the care team and had faith that the treatment my husband was choosing was right for him and that it would be effective.  As family and friends saw our faith they contributed their collective faith and our hope grew.

This is not to say there were not (and continue to be) hard days. There have been days filled with discouragement, despair, sadness and definitely fear. It is a continuous effort to focus our thoughts, perspective and energy on having faith and not letting our fear take over.

My husband shares that for him the mental challenge of living with myeloma is harder than the physical.  The impact of myeloma on mental and emotional health is real. Maintaining health in these areas contributes to physical health. It is important to give as much attention and focus to our mental health as we do our physical health.

Many have never struggled with their mental health until a diagnosis of myeloma. It can be hard to acknowledge the challenge and recognize the need for help. Following these three steps can help.  

Recognize your challenge

  • The first step is to recognize and acknowledge you are struggling emotionally or mentally
  • Identify the circumstances that are the most difficult 
    • Different time periods in the cycle of your treatment may be harder than others and side effects could impact your emotions and mental clarity
    • Are you having difficulty telling family and friends about your diagnosis, treatment or difficulties?
    • Are you feeling lonely or do you hate going to treatment alone? 

Identify available resources

There are many organizations available to offer support including:

  • Your Healthcare team- they are available to help you with all aspects of myeloma and can refer to other professionals
  • Myeloma Coach- recieve personalized support from another myeloma patient or caregiver who can personally relate to the emotional and mental challenge of myeloma.  They can share with you the resources and tools that have helped them. 
  • Myeloma Crowd Community- join a geographical chapter in your area, or other topic based chapters.  Attend meetings on isses that are of interest to you.  Surrounding yourself by a community offers strength, support and shared perspective.
  • Contact the Social worker at your treatment facility as they can provide tools and resources to achieve emotional health
  • Seek out Psychology or Psychiatric services at your treatment center because these professionals may also be able to help with common myeloma side effects like brain fog, fatigue and depression
  • Cancer Care: 800-813-4673 or www.cancercare.org offers free, professional support services to individuals, families, caregivers and the bereaved to help them cope with and manage the emotional and practical challenges of cancer
  • NAMI Helpline: National Alliance on Mental Illness offers free, nationwide peer support service. 800-50-6264 or info@nami.org
  • National Suicide Prevention Lifeline:  1-800-273-8255 (1-800-273-TALK) Anyone thinking about suicide or worried about someone in distress
  • Crisis Text line: Text HOME to 741741 - this is for anyone in crisis in the U.S. Free 24/7 support and information via text by trained crisis counselors volunteer to support people in crisis

Take Action

  • Don't be afraid to talk about it
  • The resources and tools available must be used in order for them to be effective and even a small step can help bring relief
  • Making the effort to take action will bring benefits

May is national mental health awareness month which started over 50 years ago to bring awareness to the mental and emotional challenges experienced by so many.  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 myeloma.  Let’s work to break the stigma of mental and emotional health!  Take action to provide yourself with the support, care and treatment needed to achieve health.

My husband wasn't afraid to talk about the emotional struggle he was having, and this opened the door for him to receive help. Talking to someone who could relate made all of the difference for him, and it can for you too. The Myeloma Coach program offers connection with other myeloma patients and caregivers.  They can share with you how they personally have managed the mental and emotional impact of myeloma.

 

Find or Become a Myeloma Coach

Additional articles on mental health and myeloma:

Facing Uncertainty with Myeloma

Mental Health and Myeloma: Let's Talk about it

Protecting our Mental Health

The author Rozalynn Hite

about the author
Rozalynn Hite

Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.

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