- Multiple myeloma is a rare and misunderstood cancer that people may live with for many years.
- Depending on your support needs, who you tell about your multiple myeloma diagnosis may be different.
- Conversations may differ depending on whether you’re talking to your spouse, children, friends, family, or employer.
Multiple myeloma is a relatively rare cancer that affects bone marrow plasma cells. About 150,000 people in the United States live with the condition, according to the International Myeloma Foundation.
You may have to consider a lot of factors when deciding who to tell. The nature of your relationships, your support needs, and your personal comfort level are some of the factors that may be considered.
People face misconception about multiple myeloma. It can be hard to talk about a diagnosis.
Multiple myeloma is not talked about much, says Charlene Spiller, who received a diagnosis 10 years ago. She says that no one knows she has the condition until she gives it to them.
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.
People with the condition may live for many years thanks to advances in treatment.
Talking about a multiple myeloma diagnosis with others can mean explaining that although treatments do not cure the cancer, an individual can have a vibrant and active life.
One of the first decisions people make is who to tell about their diagnosis.
It is an individual matter who to tell about a multiple myeloma diagnosis. It depends on how comfortable people are with each other and with sharing medical information.
“If you just learned you have multiple myeloma, you don’t have to explain it to your friends.”
You could make a list of people you would like to speak with. If you want to be your own spokesman, you can ask a loved one to be your one.
It is important to consider whether you need support. Sometimes people share with a neighbor in order to get assistance with their daily activities.
A partner is the first person someone will tell about a cancer diagnosis. A partner is often the person with multiple myeloma.
It is important to discuss the type of support you 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.
It is a good idea to read up on multiple myeloma with your partner. You should be familiar with the condition and prepared for the level of assistance you may need.
Information about multiple myeloma treatments and hospital visits can be found in your medical team and peer support groups.
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.
Try to keep the lines of communication open when there are disagreements. You may want to talk to a social worker or a therapist.
Talking about your diagnosis with your family can help you process it. You may want to bring questions to your cancer care team about the conversations you had.
Your friends and family may ask how they can support you. Biru suggests making a list of things you need help with, such as picking up your kids from school or taking care of your pets.
Being open and honest is what Demairo recommends.
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 to kids.
The age-appropriate language is recommended by Demairo. You might tell a child that grandma eats salty crackers because of her cancer medication.
“Some children may not be aware of a loved one’s multiple myeloma diagnosis. Others may have a lot of questions. A child should be allowed to express any fears or concerns.”
If a person with multiple myeloma lives in the same house as a child, it is a good idea to talk to the teacher.
They may exhibit different emotions in school.
It is a very personal decision to talk about multiple myeloma with your co-workers. It may be related to whether you need support to do your job.
“You are never under any obligation to say anything. 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 she first received a multiple myeloma diagnosis, Spiller was very open about her experience and owned a celebrity hair salon. She has decided to be more private about her condition now that she is working in film and television.
“She says it is your choice. I don’t think it’s anyone else’s business besides your circle of people.”
Biru notes that multiple myeloma is a lifelong condition for most people.
He thinks there is a label associated with that.
Biru had setbacks in landing jobs because of his multiple myeloma diagnosis. He was hired by one employer because he lives with multiple myeloma and could handle many priorities. Biru said that the employer is one in a hundred.
Biru joined multiple myeloma support groups and became active in the community.
He says that there is something we can get, both preparing for the negative but also harvesting the positive in our journey.
It is possible to thrive with a multiple myeloma diagnosis, according to Spiller.
“She says that multiple myeloma shouldn’t stop you from living. It is a chronic condition, but once you understand your diagnosis, you can move forward.”
Multiple myeloma is a cancer that affects the bone marrow. Sharing your diagnosis with others can mean reflecting on your relationships and weighing the support you need. The journey is personal to each person.