How to Talk with Others About Your Multiple Myeloma Diagnosis

Some people face common misconceptions about multiple myeloma. This can sometimes make it hard to talk about the diagnosis.

“Nobody really talks about multiple myeloma,” says Charlene Spiller, who received a diagnosis for the condition 10 years ago. No one realizes she even has the condition until she chooses to share that information, she adds.

Karen Demairo, the vice president of education, support, and integration for patient and professional programs at the Leukemia and Lymphoma Society (LLS), says multiple myeloma is often confused with very different cancers that have similar names, like melanoma, or with cancers that affect similar regions of the body, like bone cancer.

Although there’s no cure for myeloma, people with the condition may live for many years, thanks to advances in treatment, Demairo says.

Talking about a multiple myeloma diagnosis with others often means explaining that although treatments do not necessarily cure the cancer, an individual can have a vibrant and active life while managing the condition.

One of the first decisions many people make is deciding who in their circle they want to tell about their diagnosis.

Demairo says that choosing who to tell about a multiple myeloma diagnosis is an individual matter. It often depends on how comfortable people feel in their relationships and with sharing medical information.

If you just learned you have multiple myeloma, you don’t have to take it upon yourself to explain the condition to everyone you know.

You may instead want to make a list of people you’d like to speak with personally. You can ask a loved one to be your spokesperson and answer any questions that other friends, family, and co-workers have about your diagnosis.

Another important consideration is whether you think you’ll need support. Demairo notes that sometimes people share with a neighbor before family members in order to get assistance with daily activities.

Often the first person someone confides in about a cancer diagnosis is a partner. In many cases, a partner is also the caregiver of the person with multiple myeloma.

It’s important to talk about the type of support you may need from your partner.

“If you don’t have that conversation, there’s going to be a mismatch in my ability to receive care and my caregiver’s ability to give care,” says Yelak Biru, the president and CEO of the International Myeloma Foundation. Biru was diagnosed with multiple myeloma in 1995, at age 25.

If your partner will be your primary caregiver, it’s a good idea to read up on multiple myeloma together. That way you’ll be familiar with the condition and prepared for the level of assistance you may require.

Your medical team and peer support groups are good resources for information about multiple myeloma treatments and hospital visits.

Being a caregiver can also be emotionally challenging. Your partner may seek support through peer networks such as Myeloma Link and other support groups run by LLS. Many caregivers also find it helpful to focus on the here and now instead of reflecting on life before the diagnosis.

As conflicts within your relationship arise, try to keep the lines of communication open. You may even want to proactively talk with a psychotherapist or social worker, individually or as a couple.

Sometimes talking about your diagnosis with loved ones can help you process your experience. Having these conversations may even raise questions that you’ll want to bring to your cancer care team.

Your friends and family may ask how they can support you. Biru recommends making a list of things you’ll need help with, such as picking up your kids from school or taking care of pets when you have medical procedures.

Demairo recommends being honest and open about as much as you’re comfortable sharing.

If you’re uncomfortable talking with others one on one, websites such as CaringBridge offer spaces where you post updates about your health for others to read instead.

Honesty is important when talking with kids, Demairo says.

Demairo recommends using age-appropriate but truthful language. For example, you might tell a child that grandma eats salty crackers because her cancer medications sometimes make her nauseous.

Some children may have little visible reaction to news of a loved one’s multiple myeloma diagnosis. Others may have lots of questions. Demairo recommends letting a child express any fears or concerns they have.

If a person with multiple myeloma lives in the same house as a child, it’s a good idea to talk with the child’s teacher about the circumstances.

“They may exhibit different emotions in school [than] at home,” Demairo says.

Choosing to talk about multiple myeloma with your co-workers is a highly personal decision. It may depend partly on whether you need support to do your job.

“You’re never under any obligation to say anything,” Demairo says. “You can’t be discriminated against because you’re a cancer patient.”

If you think you’ll need workplace accommodation, Demairo recommends contacting an employee assistance program at your workplace. Organizations like Cancer and Careers offer advice about speaking with your employer directly.

When Spiller first received a multiple myeloma diagnosis, she owned a business as a celebrity hairstylist and was very open about sharing her experience. Now working in film and television, she has chosen to be more private about the condition.

“It is your personal choice,” she says. “However, I just don’t think it’s anybody else’s business, besides your circle of people.”

Biru notes that multiple myeloma differs from other cancers since it is a lifelong condition for most people.

“I think there is a label associated with that,” he says.

Biru experienced setbacks in landing jobs in his field because of his multiple myeloma diagnosis. He also had one employer hire him specifically because he lives with multiple myeloma and could therefore handle many priorities. Biru said that employer is “one in a hundred, if not one in a thousand.”

Biru says he’s benefited from becoming active in the multiple myeloma community, which includes joining multiple myeloma support groups.

“There is something that we can get, both preparing for the negative but also harvesting the positive in our journey, by connecting with others,” he says.

Spiller says that it is possible to thrive with a multiple myeloma diagnosis.

“Don’t let multiple myeloma stop you from living,” she says. “It’s a chronic condition, but once you understand your diagnosis, then you can move forward.”

Multiple myeloma is a little understood cancer that affects bone marrow. Sharing your diagnosis with others often means reflecting upon personal relationships and weighing the support you need. The journey is ultimately personal and unique to each individual.