Self advocacy in myeloma is essential. Each individual's presentation, type, and progression of myeloma is unique. Myeloma doesn't exist alone, but is coupled with other health conditions, overall wellness, socioeconomic, mental and emotional health. These individual and complex needs require personalized treatment and care. Add to that the increasing options for myeloma treatment and it can leave your head spinning. The ability to gather, assimilate and understand all of the information related to your myeloma and advocate for what you feel is right for you individually is essential for your best care, and can also feel like a full time job.
Luckily, the development and support of self advocacy is coming to the forefront in healthcare with improved recognition by providers. This conversation garnered attention this year at the American Society of Hematology (ASH) meeting.
The Wellness Studio at ASH not only shares information and tips on self care, but also showcases art created from responses of researchers and physicians to specific questions. Different questions are asked each year. This year one of the questions posed was, "How have you worked with patients to increase their self advocacy skills?"
Physicians and researchers in attendance at the meeting responded to these questions and their responses were expressed in a mural created by local artists.
Healthcare providers and scientists are encouraging their patients to advocate for themselves by:
- Developing individual care coordination plans (that can be shared with providers at any health care system)
- Working with institutional and patient support groups
- Sharing community benefits programs
- Sharing financial assistance and grant programs
- Increasing access to healthcare
- Increasing access to education
- Recognizing the patient as a part of the healthcare team
- Recognizing that patients must participate in their own care
Self advocacy does not always come naturally, especially when many believe "Dr. knows best". Educating yourself about myeloma, available treatment options, side effects, and even obtaining a second opinion allow for informed decision making. Becoming informed and asking questions does not mean you are questioning a provider's knowledge or intelligence, but leads to greater understanding. Learning how to advocate for yourself takes practice and work. The HealthTree Foundation offers many tools and resources to help you in this effort:
1) Connect with a Myeloma Coach who can share education, resources and their personal example of self advocacy
3) Use HealthTree Cure Hub to track your myeloma and identify recommended treatment options tailored for you. This information allows you to have informed discussions with your provider and healthcare team as you work to decide what treatment is right for you at the right time.
It's exciting to see healthcare providers recognize the value of educated, empowered patients. As you enter a new year with myeloma commit to learn, surround yourself with support, use available tools, and speak up!
about the author
Rozalynn Hite is the HealthTree Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.