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Nearly Half of MyMyelomaTeam Members Say They Feel Isolated and Alone

Posted on November 29, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Beth Schneider

A myeloma diagnosis can significantly impact quality of life. One of the key effects of the disease is feeling isolated and alone, according to the results of a recent survey.

To evaluate how a myeloma diagnosis affects daily activities, MyMyelomaTeam recently surveyed 218 members about their experiences living with myeloma. Survey questions investigated myeloma’s impact on day-to-day life, as well as steps members take to manage the challenges that come with the diagnosis. Here are a few of the key takeaways from the survey:

  • Myeloma has a broad impact on quality of life, as well as on emotional well-being.
  • The majority of members surveyed are actively managing myeloma, including having meaningful conversations with their doctors, learning about and staying on recommended treatments, and seeking information to manage symptoms and slow progression.
  • Members look to MyMyelomaTeam to understand the experiences of others and to get information that can help make living with myeloma easier.

Impact of Myeloma

“Quality of life” is a broad term that describes a range of topics. MyMyelomaTeam sought to find out exactly how myeloma affects quality of life.

The majority of members surveyed (72 percent) indicated that myeloma interferes with overall quality of life. This includes the following responses:

  • 60 percent feel anxious or depressed, and 66 percent feel stressed.
  • 71 percent find it hard to exercise.
  • 67 percent find it hard to do everyday chores.
  • 58 percent find it difficult to have an active social life.
  • 47 percent feel isolated or alone.

Managing Myeloma

Despite the impact of myeloma, MyMyelomaTeam members who took the survey are taking a number of steps to make it easier to live with the condition.

  • About 87 percent of surveyed members have meaningful conversations with their doctors, and 89 percent are able to stay on the recommended medication or treatment plan.
  • About 79 percent said they are taking steps to make living with myeloma more tolerable.
  • Members are able to find information on treatments (84 percent) and symptoms (78 percent), take steps to help slow disease progression (72 percent), and get emotional support from family or friends (82 percent).

Resources for Understanding and Managing Myeloma

Living with a chronic condition like myeloma can sometimes mean you spend hours researching and still can’t find the information you’re seeking. MyMyelomaTeam offers information about the symptoms of myeloma and treatments for the condition, as well as many other resources about living well with myeloma.

Connect With Others Who Understand

MyMyelomaTeam is the social network for people living with myeloma. On MyMyelomaTeam, more than 13,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

What tips or questions do you have about living with myeloma? Share your thoughts in the comments below, or start a conversation on MyMyelomaTeam.

Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Beth Schneider has been a market research professional for over 35 years. She focuses on both survey research and social listening analysis. Learn more about her here.

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