Black communities and togetherness
You can stay connected to get more info and resources to help you throughout your MM journey.
Our community ties have been crucial to our histories—from supporting our progress and celebrating our successes, to providing us support when we need it most.
We care about each other’s health and well-being. We want to be able to get up every day and contribute to our families and communities. So, when there are larger issues affecting Black people, we need to be aware in order to act. History has taught us that the community ties we form can give us the strength we need to get through difficult times.
We don’t hear enough about the impact that multiple myeloma (MM) has on all of us. By sharing the facts, we can better understand this disease and how it’s treated if we’re ever diagnosed. Changing our approach to health care today will be passed down so young people in our communities can better navigate their health if they face similar challenges later.
Although our communities give us strength, we can still face challenges within the healthcare system. At times, we may feel that we aren’t getting the best care possible—that we don’t have control over our own health. But we do. We can take proactive steps to stay healthy. We decide which doctor we want to see and how often.
As someone who has multiple myeloma, I can tell you, there’s hope y’all especially if we catch signs of it early and get treatment as soon as we know.
— Thomas Goode, Patient Advocate
In consideration of the time spent participating in this activity, Thomas Goode was paid an honorarium by Johnson & Johnson.
Black communities and togetherness
Overcoming healthcare obstacles
We work hard to provide for ourselves and those around us. Despite the many barriers we face, we always find a way to persevere. Getting the best health care for ourselves should be no different.
Barriers to our health care
Building trust with your doctor
Building trust with your doctor
It’s important to be honest and open with your doctor since the more they know about what’s happening in your life, the better they can personalize your care. As multiple myeloma (MM) treatment progresses, the care may move to a different facility and care team, and that is normal. You and your loved one may be introduced to certain specialists or support team members from a facility or organization separate from where MM was first diagnosed.
- Get a second opinion: The fact that one doctor didn’t understand you doesn’t mean the next one won’t. Ask your friends or family to recommend doctors they trust
- Speak to other members of your care team: Your nurses and pharmacists are equally concerned for your well-being. Reach out to them with any additional questions or concerns, or for referrals to other doctors
- Building new connections with your healthcare providers: Getting the best care may mean expanding your care team. Building a trusting relationship takes time, but giving voice to your needs with honesty and clarity can help you be heard. Tips for creating a trusting care dynamic.
Cost of care
Cost of care
Healthcare costs can be a strain, especially if you have multiple conditions that require your attention. Whether you have health insurance or not, testing, travel to and from appointments, hotels or hospitals stays so you can be close to a facility, and medicine can be expensive. However, for eligible patients, there may be free or low-cost options at:
- Your local hospital: Some hospitals offer free or low-cost cancer care programs. Hospital websites usually list qualifying factors
- Community health clinics: These clinics offer a range of services, including cancer screenings and follow-up care, all depending on your financial situation
- Clinical trials: In addition to providing free medicine, these studies help researchers identify treatment options for multiple myeloma (MM). Talk with a doctor about whether a trial might be right for you
Working around difficulties getting care
Working around difficulties getting care
You may need help communicating with insurance companies and care programs in order to get approved for treatments. Your care team can help you find people to iron out the details of your coverage as you go through different MM treatments.
- Social workers and case managers can can help you explore additional financial support, travel logistics, and other services that impact the cost of care
Fear of the unknown
Fear of the unknown
The more you learn about your body and issues related to cancer, the less scary these things will seem. Knowledge can help you become aware of issues related to MM early and help you be prepared to discuss them with your doctor.
Mental health
Mental health
When it comes to your health, being proactive and acting early can make a big difference.
There are a few things we can do to break this cycle:
- Scheduling regular checkups with your doctor will catch small things before they become larger problems
- In the event you or a loved one do get bad news, seeking support from engaged communities can help you stay strong
- Recognize that you may be dealing with both physical and social stress that might complicate the situation. It’s OK to not be OK. It’s OK to ask for help
Privacy concerns
Privacy concerns
Many have privacy concerns about sharing personal information with companies or sharing our personal business with those in our lives. For many, they want to maintain the way people see them without being labeled as “sick,” and this can prevent us from seeking the help and care we need.
- Keeping your personal information safe means sharing this information with trusted companies and personnel on an as-needed basis. This includes personal information, healthcare coverage, and our health status
- Turn vulnerability into a superpower to get the help you need. It takes strength to share your MM diagnosis and ask for help. But by doing so, you can take your control back so people can continue to see you as they have
Medical understanding
Medical understanding
Test results, medication instructions, information about MM—there’s so much knowledge to absorb throughout your treatment. There may be a learning curve as you get used to a new vocabulary and the complex science of how medications work. Your care team and advocacy groups can help you and your care partner learn what you need to know.
Taking charge of your health doesn’t have to be a lonely process. There are additional resources to support you on your MM journey. Find them here.
You’ve established a rapport with the patient, you’ve established trust with the patient, so there the patient feels more comfortable to share their fears, their concerns, their questions, and be more honest.
— Amy Pierre, ANP-BC, oncology nurse practitioner
In consideration of the time spent participating in this activity, Keith Casim Elam was paid an honorarium by Johnson & Johnson.
Black communities and togetherness
Sharing multiple myeloma heredity with family
We don’t want to worry our families or burden them with bad news. But if we don’t talk about cancers that run in our families, our loved ones might miss the chance to get care early on. Choosing to talk with others about our health can combat feelings of being alone and prevent us from struggling in silence.
Some benefits of opening up to others:
- Logistical support: Helping you receive care can be empowering, leaving both you and your family feeling like you have more control throughout your multiple myeloma (MM) journey
- Emotional support: Processing feelings and thoughts can be as important to the people around you as it is for yourself
- Breaking historical patterns: We know the power our voices have, and the need to put them to use for our loved ones. Keeping the information flowing about how your MM treatment is going can help everyone involved be informed and able to make changes that improve the experience
When we talk about our health—and diseases that run in the family—we not only make better decisions about our personal health but also empower our children and grandchildren to live healthier lives as well.
Tips for starting the conversation
The power of storytelling
The power of storytelling
We take joy in passing down our rich family history through storytelling. When we share our health story, we can help protect the long line to come. If you feel like your family might need time to adjust to the news, sharing it through a story may help open the conversation and create connection.
Prepare to be real
Prepare to be real
This may be the first time your family is hearing about MM. Be prepared for:
- Questions: If you have seen a doctor about MM, they might provide you with additional information to use. This website and the available downloadable guides can also help answer some of the questions your family might have
- Different reactions: You may find that family and friends react in different ways. Some may be grateful to know, others may feel a similar wave of emotions you felt, such as anxiety, fear, or anger. We should allow everyone to express their own unique emotions in order to cope with the news
- Offers for support: If you have MM, your family may want to help in any way they can. Think through how each person can best support you. It’s OK to let them know you’re still working on your care plan and will get back to them when you have more information
Sharing our health status can strengthen our bonds and deepen our family ties. Our word to uphold our MM Promise can help protect us.