Multiple Myeloma and Your Relationships
Ramae Hamrin, 50, learned to expect the unexpected in his personal relationships after being diagnosed with multiple myeloma in 2018.
The northern Minnesota resident says her best friend has distanced herself, seemingly unable to cope with Hamrin’s cancer diagnosis and highly suspicious of modern medicine. Hamrin had derived from her close mother and sister, but she expected those emotional ties to re-form given her condition. This does not happen. They came less often after she seemed to get better during chemotherapy, Hamrin says. Teacher colleagues sent cards with money and gifts, but only one still stayed in touch.
“I was surprised by people who I thought were there but couldn’t or didn’t want to be,” says Hamrin, who runs a blog about living with multiple myeloma called Incurable Blessings. There was a silver lining: an ex-boyfriend quit his job to help Hamrin after he fell and broke his hip.
New dynamic with your partner
Common symptoms of multiple myeloma – such as bone pain, nausea, mental confusion, and fatigue – can cast a curve in an otherwise healthy marriage or partnership. And if your treatment includes a corticosteroid called dexamethasone, or “dex,” the irritability and mood swings can park a dark cloud for a few days. Another curve can be started by the negative impacts of multiple myeloma on sexual desire and performance.
It is important to anticipate how a relationship may change once a partner is placed in the role of chief caregiver. “It can suddenly turn into a medical relationship, where all the conversations seem to be about cancer,” says Lindsay Weaver, senior social work advisor at MD Anderson’s Lymphoma and Myeloma Center in Houston. “You can lose that connection and why you entered into the partnership in the first place.”
During this time, this partner might also be having thoughts like, “We have children; what happens if you die? Says Kendelle Miller, clinical social worker at the Winship Cancer Institute at Emory University in Atlanta. In addition, the partner may feel unworthy of the role of caregiver and guilty of their good health, explains Paige Soleimani, oncology social worker at CancerCare in New York.
Finding emotional support beyond family and friends is essential. Psychotherapy, or talk therapy, is an option. Cancer organizations can help you find affordable group therapy sessions if you don’t have health insurance or coverage for therapy. Miller recommends seeking reference resources from the Leukemia & Lymphoma Society, the Bone Marrow & Cancer Foundation, and the International Myeloma Foundation.
When it comes to personal time, Weaver says it’s vital for both partners to be disciplined in finding opportunities every day to reconnect without discussing myeloma. “If you don’t have the strength to walk for half an hour, sit outside for your loved one for 30 minutes. It’s all about creativity, ”adds Soleimani. It is also important for both partners to book personal time without guilt each day, even if it is only for a long shower.
Dealing with Misconceptions with Family Members
As a self-describing Type A overperformator, Hamrin says she struggled to ask for things as basic as going to a doctor’s appointment. In the end, 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 be difficult down the road. Some people can get extremely emotional and withdraw. Others may not understand why you can’t do more since you look good after chemotherapy. Hamrin’s two college-aged daughters, for example, struggled with their unknown futures.
“There is a lot of old and bad information about multiple myeloma on the Internet,” Miller says. “I have to give a lot of instructions to direct people to current and specific resources.”
In addition to education, cancer counselors offer these suggestions:
- Don’t try to force family and friends to speak openly about their concerns if they are uncomfortable.
- Encourage them to seek individual or group therapy if they want to take an active role in your care.
- Be direct and firm about setting limits, for example, no visits, calls or texts on the day of a doctor’s appointment.
- During the pandemic, let your network continue to help you remotely by switching to telephone and IT tasks such as making medical appointments, arranging deliveries, and dealing with creditors.
How many revelations at work
Soleimani says most of the people she advises decide not to let their co-workers know about their condition if they feel strong enough to continue working. “They need space and standardization,” 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 she is worried about the risks of honesty for people in the service industry. A discussion with HR could protect them whether or not they need to take paid medical leave, she said.
Even if you’re selective with which coworkers you confide in, be prepared for some people to distance themselves, Weaver says. But those who promise to help can be overwhelmingly supportive.
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