Living with Chronic Lymphocytic Leukemia (CLL) often means navigating a complex healthcare system – knowing how to ask questions, sharing your needs, and participating in decisions about your care will make a meaningful difference. Self-advocacy is about making sure your values, experiences and priorities are included as part of your healthcare journey.
In a webinar originally developed for people affected by brain tumours, healthcare advocate Mary Lou Robertson shared practical strategies for self-advocacy that are highly relevant for people living with CLL and their caregivers. For people with CLL, this may include asking questions about treatment options, understanding why a particular approach is recommended, discussing your personal goals and concerns, and ensuring your healthcare team understands how CLL affects your daily life.
Healthcare systems can be complex, and busy appointments or unclear processes can sometimes make it difficult to know how to raise concerns or find the right support. Mary Lou emphasized that self-advocacy is about building a partnership with your healthcare team. While healthcare professionals bring medical knowledge and expertise, you bring valuable knowledge about your own experiences, symptoms and priorities.
Some helpful approaches to self-advocacy include:
- Know what matters most to you: Think about your concerns, goals, and what you would like to discuss with your healthcare team.
- Ask questions and gather information: Learning more about your condition, treatment options and available resources can help you feel more prepared.
- Find the right person to help: If the person you speak with cannot address your concern, ask who has the ability to help or what next steps you can take.
- Share your experience clearly: Focus on the information that is most important for your care, including how symptoms or treatments affect your daily life.
- Work together to find solutions: Healthcare decisions often involve balancing different factors, and open communication can help identify the best path forward.
Self-advocacy does not mean having to navigate the healthcare system alone or knowing everything about your condition. It is about recognizing that your experiences and priorities are an important part of making decisions about your care. You are the expert on how CLL affects your life, and even small steps, such as preparing questions before an appointment or sharing concerns that are affecting your quality of life can help ensure your needs are understood.
To learn more about practical strategies for self-advocacy, watch the full webinar here.
For more resources on navigating the healthcare system, visit CLL Canada’s Information and Resource Centre.