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Nearly Half of MyLymphomaTeam Members Say They Feel Isolated and Alone

Medically reviewed by Todd Gersten, M.D.
Written by Beth Schneider
Posted on November 22, 2021

A lymphoma 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 lymphoma diagnosis affects daily activities, MyLymphomaTeam recently surveyed 141 members about their experiences living with lymphoma. Survey questions investigated lymphoma’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:

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

Impact of Lymphoma

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

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

  • 69 percent feel anxious or depressed, and 72 percent feel stressed
  • 57 percent find it hard to exercise
  • 59 percent find it hard to do everyday chores
  • 55 percent find it difficult to have an active social life
  • 48 percent feel isolated or alone

Managing Lymphoma

Despite the impact of lymphoma, MyLymphomaTeam members who took the survey are taking a number of steps to make it easier to live with and manage the condition.

  • About 84 percent said they have meaningful conversations with their doctors, and 74 percent are able to stay on the recommended medication or treatment plan.
  • 72 percent are taking steps to make living with lymphoma more tolerable.
  • Members are able to find information on treatments (85 percent) and symptoms (78 percent), take steps to help slow progression (55 percent), and get emotional support from family or friends (54 percent).

Resources for Understanding and Managing Lymphoma

Living with a chronic condition like lymphoma can sometimes mean you spend hours researching more about the condition and still can’t find the information you’re seeking.

MyLymphomaTeam offers information about the symptoms of lymphoma and treatments for the condition, as well as many other resources about living well with lymphoma.

Connect With Others Who Understand

MyLymphomaTeam is the social network for people living with lymphoma. On MyLymphomaTeam, more than 9,900 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.

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

Posted on November 22, 2021

A MyLymphomaTeam Member

Becky3,

When you use the say hi feature - it is shown across the top. However if you are responding to a post or a story - it is sometimes hard to tell - or maybe you want to reply to one of the… read more

September 17, 2022
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I Have Panic Attacks That Come On And I Can’t Control Them. It’s Nothing But Stress. I Do The Deep Breathing, It Helps Somewhat.

July 9, 2024 by A MyLymphomaTeam Member 8 answers
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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