Myeloma & Your Relationships

Myeloma & Your Relationships

The Unexpected Challenges of Living with Multiple Myeloma

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Ramae Hamrin, a 50-year-old resident of northern Minnesota, has learned to expect the unexpected when it comes to her personal relationships since being diagnosed with multiple myeloma in 2018. Surprisingly, her best friend distanced herself, seemingly unable to cope with Hamrin’s cancer diagnosis and skeptical about modern medicine. Even her own mother and sister, whom she expected to support her during this difficult time, became less available after she showed signs of improvement during chemotherapy. However, there was a silver lining: an ex-boyfriend quit his job to help Hamrin when she fell and broke a hip. These experiences prompted Hamrin to start a blog called “Incurable Blessings,” where she shares her journey of living with multiple myeloma.

Living with multiple myeloma can have a significant impact on personal relationships, particularly in marriages and partnerships. The common symptoms of this condition, such as bone pain, nausea, mental fogginess, and fatigue, can introduce unexpected challenges. Furthermore, if the treatment involves a corticosteroid called dexamethasone or “dex,” irritability and mood swings may further strain the relationship. Additionally, multiple myeloma can negatively affect sexual desire and performance, putting strain on the intimate aspect of the relationship.

Lindsay Weaver, a senior social work counselor at MD Anderson’s Lymphoma and Myeloma Center in Houston, emphasizes the importance of anticipating how a partner’s role as a primary caregiver can change the dynamic of the relationship. The focus often shifts to medical discussions, causing the connection and initial reasons for coming together to fade into the background. This new dynamic may bring about thoughts and concerns, such as the future well-being of the family, especially if there are children involved. The partner may also feel undeserving of the caregiver role and experience guilt about their own good health. Paige Soleimani, an oncology social worker with CancerCare in New York, suggests finding emotional support beyond family and friends. Psychotherapy or talk therapy can be immensely helpful, and Cancer organizations can assist in finding affordable group therapy sessions.

Maintaining personal time and finding opportunities to reconnect without discussing myeloma becomes crucial for both partners. Lindsay Weaver advises both partners to be disciplined in dedicating time each day to reconnect without the burden of illness. This could involve going for a walk together or simply sitting outside and enjoying each other’s company. The importance of guiltlessly setting aside personal time, even if it’s just for a long shower, cannot be overstated.

When it comes to family and friends, there may be some hurdles in accepting help. Recognizing that accepting help is akin to giving a gift can help overcome the reluctance to ask for assistance. However, it is essential to be prepared for emotional reactions from loved ones. Some may withdraw due to their emotions, while others may struggle to understand the limitations imposed by the illness. Often, outdated or incorrect information about multiple myeloma found on the internet adds to their concerns. Educating family and friends about current and accurate resources can help bridge this information gap. Cancer counselors provide suggestions such as not forcing uncomfortable conversations, encouraging therapy if they wish to be actively involved in care, setting clear boundaries, and utilizing remote support, especially during the pandemic.

Revealing the diagnosis at work is a personal decision. Many individuals with multiple myeloma choose to keep their condition private if they feel able to continue working. Paige Soleimani advises her clients to at least meet with human resources to explore potential accommodations if needed. Higher-paying jobs often offer flexibility in work hours and telecommuting options, whereas individuals in the service industry may face different challenges. Kendelle Miller, a clinical social worker with the Winship Cancer Institute of Emory University, highlights the importance of discussing their condition with HR to protect their rights, including taking a paid or unpaid medical leave of absence.

It’s important to be prepared for varied reactions from colleagues when disclosing the diagnosis. While some may distance themselves, others may surprise you with unwavering support and assistance. The process of living with multiple myeloma can be unpredictable, but finding the right support network and taking care of one’s personal and emotional well-being can make a significant difference.