by David Wallace
Living with myeloproliferative neoplasms (MPNs) can be challenging both physically and emotionally. MPNs are rare blood cancers that require continuous management and care. The three main types of MPNs are myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET). As a patient, it is crucial to become your own advocate in order to navigate the complexities of the disease, understand treatment options, and receive the best possible care. In this article, we will discuss the importance of self-advocacy and provide practical tips to empower people living with MPNs to take control of their health and well-being.
Understanding the Role of an MPN Patient Advocate
An MPN patient advocate is someone who actively seeks to promote the well-being and rights of people living with MPNs. The patient themselves, a member of their family, or a close friend can fill this role. Becoming your own advocate means taking an active role in decision-making, learning about the condition, and ensuring that your voice is heard throughout the medical journey.
Benefits of Self-Advocacy
Self-advocacy is more than a practice—it’s a journey towards empowerment, where you, as a patient living with MPN, can experience significant and measurable improvements in your healthcare experience and overall quality of life. Let’s explore the benefits that come with becoming your own advocate:
- Empowerment: Taking an active role in your healthcare decisions can lead to a greater sense of control over your life. Research has found that cancer patients who were more knowledgeable and communicative about their preferences experienced higher satisfaction with treatment decisions.
- Knowledge: Armed with the latest information on MPNs, you can make choices that are best for you. Informed patients are better able to manage symptoms and make treatment decisions that align with their values.
- Communication: Effective communication with your healthcare team is essential for receiving comprehensive, high-quality care.
- Access to Resources: As an advocate for yourself, you’ll discover a wealth of resources specifically tailored to MPNs. These resources can provide support, education, and community connections that are invaluable on your journey. Here are some excellent resources to check out: MPN Research Foundation, PV Reporter, LLS (Leukemia & Lymphoma Society), MPN Cancer Connection, MPN Advocacy and Education International, MPN Voice, Cancer Support Community, and CancerCare, just to name a few.
- Improved Quality of Life: By advocating for your needs, you can achieve a better balance, leading to improved emotional well-being. Studies have found that self-advocacy in cancer care can significantly enhance patients’ quality of life, not just by improving health outcomes but also by providing a sense of fulfillment and self-efficacy.
Practical Tips for Effective Self-Advocacy
- Educate Yourself: Anchor your advocacy around robust knowledge about MPNs, treatments, and supportive resources.
- Ask Questions: Encourage open dialogue with your medical team, ensuring clarity on all fronts. I use a notebook for questions and answers for each appointment.
- Keep Records: A meticulous medical record facilitates informed conversations with your care providers. Keep a binder or make annual folders to store your documents.
- Seek Second Opinions: Consult with an MPN expert if there’s a lack of clarity in your treatment plan. The MPN universe of trials and treatments is expanding at a rapid pace. Not all physicians are up-to-date on the latest information.
- Build a Support Network: Interactions with fellow MPN patients and groups can offer invaluable insights and camaraderie. This list of Facebook groups is an excellent place to start.
- Stay Organized: Consolidate medical documents to streamline discussions with healthcare professionals.
- Participate in Decision-making: Collaborate with your medical team, ensuring your treatment aligns with your preferences.
- Understand Your Insurance: Be aware of your insurance benefits to avoid unforeseen expenses.
- Stay Informed About Clinical Trials: Keep up-to-date with the latest research and MPN clinical trials. Clinical trials can offer access to innovative treatments and therapies. Utilize our MPN Clinical Trial Finder to search for relevant trials that may be suitable for your specific MPN.
- Prioritize Self-Care: Embrace holistic well-being, indulge in rejuvenating activities, and seek support when required.
The experience of living with MPNs, while complex, becomes navigable with self-advocacy. An informed, participative approach fosters collaborative healthcare relationships. It’s important to remember that self-advocacy doesn’t equate to isolation. It’s about steering your healthcare journey with the collaborative strength of professionals, loved ones, and the broader MPN community. Together, you create a pathway to exceptional care and a better life with MPNs.
“Patients’ preferred and perceived level of involvement in decision-making for cancer treatment: A systematic review,” Psycho-Oncology.
“Exploring the Relationships Between Patient Self-Advocacy and Cancer Symptom Burden,” National Library of Medicine.
- “Self-Advocacy, A Cancer Survivors Handbook,” National Coalition for Cancer Survivorship (NCCS).
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