Understanding the Impact of Multiple Myeloma on Personal Relationships
Introduction
Dealing with a cancer diagnosis is challenging in many ways, and one aspect that is often overlooked is the impact it can have on personal relationships. Ramae Hamrin, a 50-year-old woman from northern Minnesota, shares her experience of being diagnosed with multiple myeloma in 2018 and how it affected her relationships. Her story highlights the unexpected changes and challenges that can arise when facing a serious illness like multiple myeloma.
The Strain on Close Relationships
One of the most distressing aspects of Hamrin’s journey with multiple myeloma was the strain it placed on her close relationships. Her best friend drifted apart, seemingly unable to cope with the emotional and physical toll of Hamrin’s diagnosis and treatment. Hamrin had also hoped for support from her close family members, but they appeared less frequently and were not as involved as she had anticipated. This lack of support from loved ones can be a devastating blow for someone already dealing with the challenges of cancer.
Hamrin’s experience is not uncommon. The common symptoms of multiple myeloma, such as bone pain, nausea, mental confusion, and fatigue, can throw a curveball into an otherwise healthy marriage or partnership. The side effects of treatment, including mood swings and irritability caused by certain medications like dexamethasone, can further strain relationships. Additionally, the impact of multiple myeloma on sexual desire and performance may also contribute to the challenges faced by couples.
The Role of the Caregiver
When a partner assumes the role of primary caregiver, the dynamics of the relationship can drastically change. The focus shifts to medical concerns, and conversations often revolve around cancer and treatment. This transformation can cause the loss of the connection that initially brought the couple together and add additional stress to an already challenging situation.
Partners who take on the caregiver role may also struggle with feelings of unworthiness and guilt for their own good health. They may grapple with thoughts about the future, such as the impact of the illness on their relationship, as well as concerns about what would happen if the diagnosed person were to pass away.
Finding Support Beyond Family and Friends
During such trying times, finding emotional support beyond family and friends is crucial. Psychotherapy and talk therapy can be effective options for dealing with the emotional toll of a cancer diagnosis and its impact on relationships. However, finding affordable therapy sessions can be a challenge for those without health insurance or coverage for therapy.
There are several organizations, such as the Leukemia and Lymphoma Society, the Bone Marrow and Cancer Foundation, and the International Myeloma Foundation, that can provide helpful resources and guidance in finding support groups and therapy options. These resources can help individuals and couples navigate the complex emotional landscape that accompanies a cancer diagnosis.
The Importance of Personal Time
Amidst the chaos of cancer treatment and caregiving responsibilities, it is essential for both partners to make time for themselves and for their relationship without the constant focus on myeloma. Lindsay Weaver, a senior social work counselor, suggests creative ways for couples to reconnect without discussing the illness, such as taking a walk together or simply spending time outdoors.
Self-care is equally important for those providing care. It is crucial for caregivers to set aside personal time without feeling guilty, even if it’s just for a long shower or indulging in a hobby they enjoy. Taking care of oneself allows caregivers to replenish their energy and maintain their own well-being, which in turn benefits their ability to provide support and care to their loved one.
Challenges in Accepting Help
Accepting help can be difficult for individuals who are accustomed to being self-reliant, like Hamrin, who is described as an A-achiever. Asking for assistance with even basic tasks, such as a ride to a doctor’s appointment, can initially feel challenging. However, it’s important to recognize that accepting help is not a sign of weakness but rather an opportunity for others to show their support and care.
Despite the potential benefits of accepting help, there can be bumps along the road. Some people may become emotionally overwhelmed and withdraw, while others may not fully understand the extent of the challenges faced by the person with multiple myeloma. Education and spreading accurate information about the disease can help dispel misconceptions and foster a more supportive environment for those dealing with multiple myeloma.
Supporting a Loved One with Multiple Myeloma
If you have a loved one with multiple myeloma, there are certain steps you can take to support them during their journey:
- Don’t try to force family and friends to talk openly about their concerns if they feel uncomfortable. Respect their boundaries and offer support without judgment.
- Encourage them to seek individual or group therapy if they are willing to play an active role in their care. Therapeutic support can provide a safe space for them to process their emotions and find coping strategies.
- Be direct and firm when setting limits. For example, if they prefer no visitors, calls, or texts on the day of a doctor’s appointment, communicate this clearly to avoid unnecessary stress or disruption.
- During the pandemic, support can still be offered remotely. Offer to help with tasks such as scheduling doctor appointments, arranging deliveries, or dealing with creditors over the phone or through digital communication.
The Challenges faced by Coworkers
Many individuals facing a cancer diagnosis choose not to disclose their condition to coworkers, particularly if they feel capable of continuing their work. They may desire a sense of normalcy and avoid being treated differently due to their health situation. However, it is recommended that individuals at least meet with human resources to discuss any necessary accommodations that may be required in the future.
Individuals in higher-paying jobs often report that their employers are accommodating and flexible with work hours or telecommuting options. However, individuals in the service industry may face greater challenges, as disclosing their diagnosis could potentially put their job security at risk. Having open conversations with human resources can provide protection and support in case the need for medical leave arises.
When one does choose to share their diagnosis with coworkers, they should be prepared for a range of reactions. While some individuals may distance themselves, others can be overwhelmingly understanding and supportive. It’s important to remember that everyone reacts differently, and not everyone may fully comprehend the implications of a cancer diagnosis.
Conclusion
Living with multiple myeloma presents numerous challenges, with one of the most significant being the impact on personal relationships. The strain on close relationships, the transformation of the caregiver role, and the importance of finding support beyond family and friends are all critical aspects to consider when navigating the complexities of a cancer diagnosis.
Seeking therapy, setting aside personal time, and accepting help are crucial elements in maintaining both emotional well-being and the strength of relationships. It’s essential to foster open communication, spread accurate information about multiple myeloma, and nurture a supportive environment for those affected by the disease.
Summary
Ramae Hamrin, a 50-year-old woman diagnosed with multiple myeloma in 2018, shares her experiences of the unexpected changes and challenges that arose in her personal relationships. The symptoms and side effects of multiple myeloma can strain marriages and partnerships, leaving individuals and their loved ones feeling disconnected and overwhelmed. Navigating the transformation in roles and dynamics within a relationship can add additional stress. Seeking support from organizations and therapy can provide necessary emotional guidance. It is important for both partners to carve out personal time and accept help, recognizing that it is not a sign of weakness. Those close to individuals with multiple myeloma should aim to provide non-judgmental support and encourage therapy if needed. Challenges may also arise in the workplace, with varying levels of understanding and accommodations. Ultimately, fostering open communication and spreading accurate information about multiple myeloma is essential in creating a supportive environment for those affected by this disease.
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Ramae Hamrin, 50, learned to expect the unexpected in her personal relationships after being diagnosed multiple myeloma in 2018.
The northern Minnesota resident says her best friend drifted apart, seemingly unable to deal with the Hamrin issue. cancer diagnosis and strongly distrustful of modern medicine. Hamrin had withdrawn from his close mother and sister, but hoped that those emotional ties would reform given his condition. That didn’t happen. They appeared less frequently after it seemed to get better for chemotherapysays Hamrin. Fellow teachers sent cards with money and gifts, but only one kept in constant contact.
“I was surprised by the people I thought would be there but couldn’t or didn’t want to be there,” says Hamrin, who blogs about living with multiple myeloma called Incurable Blessings. There was a silver lining: An ex-boyfriend quit her job to help Hamrin after she fell and broke her hip.
Common symptoms of multiple myeloma, such as bone pain, nauseamental confusion and fatigue — can throw a curveball in an otherwise healthy marriage or partnership. And if your treatment includes a corticosteroid called dexamethasone or “dex,” then irritability and mood swings can cast a dark cloud for a few days. The negative impacts of multiple myeloma on sexual desire and performance may throw another curve.
It is important to anticipate how a relationship may change once the partner assumes the role of primary caretaker. “It can suddenly turn into a medical relationship, where all the conversations seem to be about cancer,” says Lindsay Weaver, senior social work counselor at the MD Anderson Myeloma & Lymphoma Center in Houston. “You may lose that connection and why you joined the association in the first place.”
Meanwhile, that couple could also be dealing with thoughts like: “We have children; What happens if you die?” says Kendelle Miller, a clinical social worker at Emory University’s Winship Cancer Institute in Atlanta. In addition, the partner may feel unworthy of the role of caretaker and guilty for their good health, says Paige Soleimani, an oncology social worker with CancerCare in New York.
Finding emotional support beyond family and friends is essential. Psychotherapyeither talk therapyit is an option. Cancer organizations can help you find affordable groups therapy sessions if you don’t have health insurance or does not cover therapy. Miller recommends looking for reference resources at the Leukemia and Lymphoma Society, the Bone Marrow and Cancer Foundation, and the International Myeloma Foundation.
As for personal time, Weaver says it’s vital that both partners discipline themselves to find opportunities every day to reconnect without talking about myeloma. “If you don’t have the strength for a half-hour walk, sit outside for your loved one for 30 minutes. It’s about being creative,” adds Soleimani. It’s also important that both partners set aside personal time every day without feeling guilty, even if it’s just for a long shower.
Hamrin, who describes herself as an A-achiever, says she had a hard time asking for things as basic as a ride to a doctor’s appointment. Eventually, she decided that “when you accept help, you are really giving a gift, because other people want to help.”
But getting to that level of comfort with family and friends can have some bumps in the road. Some people can become extremely emotional and withdraw. Others may not understand why you can’t do more if you look good after chemotherapy. Hamrin’s two college-age daughters, for example, were struggling with their unknown futures.
“There is a lot of old and bad information about multiple myeloma on the Internet,” says Miller. “I have to give a lot of instructions on how to direct people to accurate and up-to-date resources.”
In addition to education, cancer counselors offer these suggestions:
- Don’t try to force family and friends to talk openly about their concerns if they feel uncomfortable.
- Encourage them to seek individual or group therapy if they are going to play an active role in your care.
- Be direct and firm when setting limits, such as no visitors, calls, or texts on the day of the doctor’s appointment.
- During the pandemic, let your network continue to help you remotely by switching to phone and computer tasks like scheduling doctor appointments, arranging deliveries, and dealing with creditors.
Soleimani says that most of the people he counsels choose not to tell their coworkers about their condition if they feel strong enough to keep working. “They need the space and the normalization,” she says. But she encourages them to at least meet with human resources in case accommodations are needed at some point.
Clients with higher-paying jobs often report that their employers were extremely flexible with work hours and telecommuting options, Miller says. But he worries about the risks of honesty for people in the service industry. A conversation with Human Resources could protect them if they need to take paid or unpaid medical leave, she says.
Even if you’re selective about the colleagues you trust, be prepared for some people to distance themselves, Weaver says. But those who promise to help can be overwhelmingly understanding.
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