Ramae Hamrin, 50, learned to expect the unexpected in her personal relationships after she was diagnosed with multiple myeloma in 2018.
The northern Minnesota resident says her best friend distanced herself, seemingly unable to deal with Hamrin’s cancer diagnosis and strongly suspicious of modern medicine. Hamrin had drifted from her nearby mother and sister, but she expected those emotional bonds to reform given her condition. That didn’t happen. They came around less often after she seemed to improve during chemotherapy, Hamrin says. Fellow teachers sent cards with money and gifts, but only one consistently kept in touch.
“I was surprised by people I thought would be there but couldn’t be or didn’t want to be,” says Hamrin, who runs a blog about living with multiple myeloma called Incurable Blessings. There was one positive: An ex-boyfriend quit his job to help Hamrin after she fell and broke a hip.
Common symptoms of multiple myeloma — such as bone pain, nausea, mental fogginess, and fatigue — can throw a curve into an otherwise healthy marriage or partnership. And if your treatment includes a corticosteroid called dexamethasone, or “dex,” then irritability and mood swings may park a dark cloud over some days. Yet another curve can be thrown by multiple myeloma’s negative impacts on sexual desire and performance.
It’s important to anticipate how a relationship may change once a partner is thrust into the role of chief caregiver. “It can suddenly become a medical relationship, where all conversations seem to be about the cancer,” says Lindsay Weaver, a senior social work counselor with MD Anderson’s Lymphoma and Myeloma Center in Houston. “You can lose that connection and why you got into the partnership in the first place.”
Meanwhile, that partner might also be dealing with thoughts like, “We have kids; what happens if you pass away?” says Kendelle Miller, a clinical social worker with the Winship Cancer Institute of Emory University in Atlanta. Plus, the partner may feel unworthy of the caregiver role and guilty about their good health, says Paige Soleimani, an oncology social worker with CancerCare in New York.
Finding emotional support beyond family and friends is critical. 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 it doesn’t cover therapy. Miller recommends researching referral resources at the Leukemia & Lymphoma Society, Bone Marrow & Cancer Foundation, and International Myeloma Foundation.
As for personal time, Weaver says it’s vital for both partners to become disciplined about finding opportunities each day to reconnect with no discussion of myeloma. “If you don’t have the strength to go for a half-hour walk, then sit outside for your loved one for 30 minutes. It’s all about being creative,” Soleimani adds. It’s also important for both partners to guiltlessly set aside personal time each day, even if just for a long shower.
As a self-described type A overachiever, Hamrin says she struggled to ask for things as basic as a ride to a doctor’s appointment. Eventually, she decided that “when you accept help, you’re really giving a gift, because other people want to help.”
But getting to that comfort level with family and friends may have a few bumps in the road. Some people may become extremely emotional and withdraw. Others may not understand why you can’t do more since you look fine after chemotherapy. Hamrin’s two college-age daughters, for example, had difficulties over their unknown future.
“There is a lot of old, bad information about multiple myeloma on the internet,” Miller says. “I have to do a lot of instruction about directing people to current, accurate resources.”
Apart from education, cancer counselors offer these suggestions:
- Don’t try to force family members and friends to talk openly about their concerns if they’re uncomfortable.
- Encourage them to seek individual or group therapy if they will play an active role with your care.
- Be direct and firm about setting boundaries, e.g., no visits, calls, or texts on the day of a doctor’s appointment.
- During the pandemic, let your network keep helping you remotely by shifting to phone and computer tasks like setting medical appointments, arranging deliveries, and dealing with creditors.
Soleimani says most of the people she counsels decide against telling co-workers about their condition if they feel strong enough to keep working. “They need the space and 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 exceedingly flexible with work hours and telecommuting options, Miller says. But she worries about the risks of honesty for people in the service industry. A discussion with HR could protect them if they need to take a paid or unpaid medical leave of absence, she says.
Even if you’re selective with which colleagues you confide in, prepare yourself for some people to distance themselves, Weaver says. But those who promise to help may show themselves to be overwhelmingly supportive.