Pride and Prayer: Living With Multiple Myeloma as a Black American

When she was growing up, Calloway-Campbell recalls, her parents “made clear whatever happens in this household stays in this household. We were taught not to say anything.” So when her husband was diagnosed with multiple myeloma six years ago, the couple’s natural response was to keep the news to themselves.

To that end, Calloway-Campbell laid down the law with her adult daughters. “I told them, ‘We are not going to put this out on social media. I will decide who to tell and how. If you have a few close friends you need to talk to, that’s fine, but you may not share blow-by-blow details.’”

Besides tradition, at least among Black Americans of the baby boomer generation, there’s likely more behind a shared reluctance to talk openly about personal subjects. Pride may be one factor, especially for men. For example, a myeloma diagnosis often makes it necessary to stop working. This could be a devastating blow to someone who is used to being the head of the household and primary breadwinner.

For anyone living with a chronic illness, talking to people who are facing the same challenges can provide powerful mental and emotional medicine. Joining a support group, in person or online, can be just what the doctor ordered — literally and figuratively — as part of a comprehensive treatment plan for multiple myeloma.

The benefits of joining a support group for any type of cancer are plentiful, according to the National Cancer Institute. Among them:

• A better quality of life overall
• An increased chance of survival
• Hope
• Feeling less alone
• The opportunity to talk through difficult feelings
• Tried-and-true tips for dealing with practical problems
• Help coping with treatment side effects

Taking it to church is one way. The majority of Black Americans attend services on a regular basis, and most turn to prayer when making major life decisions, according to Pew Research Center. This reliance on religion is so important, in fact, that it has been mined for ways to help prevent cancer in the Black community. One example is Project CHURCH (Creating a Higher Understanding of Cancer Research and Community Health), which conducts research in partnership with faith communities.

“We use our churches. Faith is important to us,” says Calloway-Campbell. “In our myeloma Facebook group, we are okay to talk about God. When my husband had a bone marrow biopsy that came back with no detection of the disease, I posted a praise report: ‘God is blessing me on this journey, but here’s what He did for me today.’ That’s how we get through this.”

For Black Americans with multiple myeloma, joining a support group of peers who share the same cultural perspectives is important. Some key sources:

• The National Black Church Initiative, a coalition of 150,000 Black and Latino churches that provides health information to people of color based on faith and sound health science
• Organizations and associations for Black professionals
• For members, one of the “Divine Nine” Black fraternities and sororities

For Black Americans with myeloma who don’t want to join a group — or would like supplemental support as they contend with the disease — working one-on-one with someone who is further along in the course of the disease and looks like them can be invaluable.

“I hear from Black patients all the time that they need somebody who looks like them,” says Calloway-Campbell. “Black men especially need to talk to Black men. It’s a major thing in our culture. Black men take their young sons to the Black barbershop, and they sit around for hours and just talk.”

The beauty of peer-to-peer coaching, regardless of someone’s ethnicity or diagnosis, is that it’s typically possible to “shop around” for a person who has deep experience or expertise in whatever issues are front of mind.

For example, some people may have a background in mental health care, unique knowledge about financial or legal matters that may come up during treatment, or in-depth experience with a particular medication or therapy.

Top 3 Coach and Mentor Programs for Multiple Myeloma

These programs don’t cater specifically to Black Americans, but all offer access to Black coaches or mentors.

• Multiple Myeloma Research Foundation’s Myeloma Mentors program
• HealthTree Foundation’s Coach team
• The Leukemia & Lymphoma Society’s Patti Robinson Kaufmann First Connection Program