How to Advocate for Yourself

Navigating a multiple myeloma diagnosis can be overwhelming, but you don't have to figure out everything all at once. In this video, we'll be covering how to ask the right questions, who your support system is, and how consulting a specialist can affect your care. And these insights will help you become your own best advocate. How can patients advocate for themselves and their communities to improve myeloma care and reduce disparities? Patients can work to understand the disease, treatment options, and latest research. It's hard to understand where to start. If this is something that's coming at you sideways, which is what I tend to tell my patients, it's coming at you sideways. So you have to think about absorbing the information in a palatable way. You can't absorb it all at once, right? So that may mean just maybe making your own notes. Everybody kind of absorbs information in different ways. If you're a reader, read about it. If you are somebody who learns better from videos, maybe watch a five-minute video about it on one of these sites that would be giving some information. So that at least you understand maybe one or two things about it. And then give it time. Everything's not going to be understood in one day or two days or a week or two weeks. Don't be hard on yourself. What I tell my patients is that in three months, you'll know everything that I know about myeloma. The trick is that you won't know it the first day. You won't know it the second day. You may not know it the first month. You'll learn everything about this disease in one week or in three weeks. You're still dealing with the diagnosis or still dealing with that the disease has relapsed. Give yourself some grace and take your time in understanding it. And then it will come to you. Take time to educate yourself about myeloma. Dr. Google is suitable for many things, but there are more reliable places providing the latest and most up-to-date information on multiple myeloma. Reliable sources include health care providers, reputable medical websites, and myeloma-specific organizations. Health Tree University is a great place to start. It has all the information you need to be in charge of your care. Another thing you can do is maintain open, honest communication with health care providers. Prepare questions in advance. Bring a support person to appointments and take notes. Being an advocate for multiple myeloma is not only important from the side of the physician advocating for the patient, but also for patients and their loved ones and family members to ask questions. Be curious. When you are being treated by your physician for your myeloma, some of the ways you can be curious is write things down. Bring a notebook. Bring a family member who may be able to remember some questions that you might have or may be able to help you with those note-taking processes so that you can come back with intelligent questions, come back with questions that really speak to what you need answered. What we want to stress to patients is you do not have to have a medical background or medical knowledge to ask questions. If you are still not getting the answers, ask the questions again. Say, Doc, I really do not understand a lot of the things that you told me. Can you explain it again? As physicians, sometimes we may think we are explaining it very simply, but it may not be coming across that way. This is our job. This is what we do every day, but sometimes it gets mixed up in the messaging because as we always say, it is a team approach. In order for you to be an effective part of the team, you have to be able to ask questions and get the information that you need. If you feel as if information is coming at you, but you are not sure if it is because you are being talked at rather than having a conversation, which is a back and forth, then pause. Take a moment of pause and highlight to your provider. Your provider may not even know that that is how you feel. You can ask for clarification if you do not understand something. Try to use statements that have I to express your feelings or concerns. For example, I feel unheard or I am concerned about this pain that I am experiencing. If you honestly feel like you are being dismissed, you are not being heard, your concerns are not being addressed, then you should consider seeing another physician. If you feel like you are not getting your needs addressed, bring an advocate. An advocate could be a family member. The advocate could be a friend. The advocate could be someone else that you met in a support group who had the same diagnosis. One thing that we have noticed, especially the people with ethnicity, is sometimes they do not want to engage their families. They want to keep having cancer a secret. They want to really bring in... They are matriarchs of their family and they do not want to have their family worry about because they are in charge. Bring in your family. So when we see patients, I make sure that we ask, bring a family member with you. Have another person available to have another set of ears to say when we talk about all these very complex things in myeloma that you have someone that is taking notes for you that can repeat it. Ask your doctor to write down things. Ask your doctor to record conversations. Where can I find my written reports? Get a written plan. Many times... So we are in an electronic medical record arena now. And so many times we leave a doctor's office. They will give you something called an after visit summary where it will lay out the aspects of the visit and what medications were prescribed, what the recommendations are in regards to diet and exercise and or tests that need to be done or specialists that you need to see. So that is a good record that you can have for yourself of the visit. And it's also good for you to be able to take that record to the next physician or specialist that you'll have to see. Keep records. You can utilize CUREhub to track your myeloma by adding information from different hospitals and information that only you know. You can find personalized treatment options, clinical trials, find your myeloma twin, and a listing of myeloma specialists as well. We encourage you to check out Health Tree CUREhub, a place where you can find treatment options, clinical trials, and participate in research. Join Health Tree CUREhub and to get started you can visit the link in the description below. Don't hesitate to seek second opinions or consult specialists to ensure you receive the best possible care. Navigating myeloma can be daunting. But you're not in this alone. Stay curious, keep asking questions, and don't be afraid to seek support. If you'd like more information on how to be more involved in your care, check out these Health Tree University courses. We'd like to thank our doctors, our sponsors, and of course our audience for making this video possible.