The Power of Sharing: How Discussing Your Myeloma Diagnosis Can Help

Receiving a diagnosis of MGUS, smoldering myeloma, or multiple myeloma can feel overwhelming. A recent study reveals that sharing this news with others might make a significant difference in how well patients cope with their diagnosis and treatment journey.

What the Research Tells Us

Researchers from leading institutions, including the Geisel School of Medicine at Dartmouth, the University of Illinois Chicago, Memorial Sloan Kettering Cancer Center, and HealthTree Foundation, conducted a comprehensive study in 2024. They surveyed 510 patients through the HealthTree Cure Hub® Registry to understand how people handle sharing their diagnosis and its impact on their well-being.

The Circle of Trust: Who Do Patients Tell?

The study revealed that nearly all participants (98%) chose to share their diagnosis with at least one person. Most commonly, patients confided in their closest relationships:

• Their spouse or partner was the primary confidant for 60% of patients, followed by friends (10%), adult children (9%), and siblings (8%).
• Some patients (2%) also specifically informed other physicians involved in their care.

Motivations for Sharing

When asked why they decided to share their diagnosis, patients revealed multiple meaningful reasons:

"I needed emotional and moral support," explained the majority of participants (84%). Others shared because they expected support (45%) or wanted to raise awareness about these conditions (31%). Many found that sharing gave them a sense of control over their situation (29%) and even strengthened their relationships (24%).

The Impact on Emotional Well-being

Perhaps the most significant finding was how sharing affected patients' ability to cope. A majority (79%) of participants reported that disclosure had a positive impact on their coping, with:

• Half of the participants reported a very positive effect
• Another 29% experienced somewhat positive benefits
• Only 4% noted any negative impact

"These findings challenge the notion that keeping a diagnosis private is better," notes the research team. "The data clearly shows that sharing can create valuable support networks and improve emotional well-being."

Making the Decision to Share and Building a Support Network

If you're considering sharing your diagnosis, consider these insights from the study:

• Start with those closest to you who are most likely to offer support
• Share at your own pace and comfort level
• Be clear about what kind of support would be most helpful
• Remember that sharing can help others understand your experience better

While sharing with family and friends is important, connecting with others who understand your specific experience can be equally valuable. Online communities and support groups offer unique opportunities to learn from others' experiences, share concerns with people who truly understand, and feel less isolated in your journey.

Looking Forward

The researchers note that while this study provides valuable insights, participants were already engaged with the HealthTree platform, suggesting they might be more inclined to share their experiences.

Whether you're newly diagnosed or further along in your journey, remember that sharing your experience is a personal choice. However, this research suggests that opening up to others might provide valuable emotional support and coping resources. Future research will explore more diverse patient populations to better understand different perspectives on diagnosis disclosure.

Connect with Others

If you're interested in sharing your experience or learning from others, consider joining HealthTree Connect, a social media network specifically designed for people affected by MGUS, smoldering myeloma, and multiple myeloma. Here you can:

• Connect with others who understand your experience
• Share your insights and learn from others
• Access resources and support
• Contribute to ongoing research efforts

Join HealthTree Connect

Source: 

• Diagnosis disclosure patterns among patients with plasma cell disorders