Self-Advocacy

FINDING YOUR VOICE

Self-Advocacy & Cancer Julie Larson, LCSW – www.julielarsonlcsw.com

OVERWHELM. UNCERTAINTY. FEAR. WORRY. Fear of the Unknown can leave one feeling paralyzed and cautious.

Difficult Past Experiences with the health care team impact trust and shape future worry.

Vulnerability and Power Dynamics can create an imbalance in the doctor-patient relationship Worry about Judgement can keep us from voicing our worry, asking uncomfortable questions.

Julie Larson, LCSW – www.julielarsonlcsw.com

THE ENVIRONMENT Sterile Clinical Spaces can trigger feelings of being “sick” and vulnerable – feels uncomfortable.

Rushed Appointments contribute to anxiety, a sense of urgency and expectation during medical conversations.

Medical Vocabulary can be confusing or daunting and lead to feelings of disconnect with care.

Medical Equipment can evoke feelings of powerlessness and anxiety activating flight or fight.

Julie Larson, LCSW – www.julielarsonlcsw.com

THE HEALING POWER OF SELF-ADVOCACY Stand Up for Self

Build Teams and Partnerships

• Could be considered a set of skills to gain power and a renewed sense of control within the healthcare system

• A process for promoting inner strength & interpersonal connection with the healthcare team –

Julie Larson, LCSW – www.julielarsonlcsw.com

WHY IS THIS HARD? Don’t want to complain.

Don’t want to be labeled an ”anxious patient” – annoying to the doctors

Fear your needs will impact the care you receive or distract from treating the cancer Want to avoid more tests or unwanted news Assume they already know what you feel – this isn’t new Julie Larson, LCSW – www.julielarsonlcsw.com

UNDERSTANDING SELF-ADVOCACY SELF-AWARENESS • Pay attention with purpose.

• What is in your mind?

• Create a list of concerns and questions.

• How is treatment, side effects or symptoms impacting your daily life?

• What is NOT working?

• What has changed?

• What would you want to be different?

Julie Larson, LCSW – www.julielarsonlcsw.com

WRITE IT OUT • Writing can be safe – not performative.

• A landing pad for the truth or what feels private (secret) • Getting thoughts out of our head helps us discover unvoiced thoughts or concerns

• Helps us minimize the gap between knowing and feeling

Julie Larson, LCSW – www.julielarsonlcsw.com

UNDERSTANDING SELF-ADVOCACY INFORMATION SEEKING • Work to understand the specifics of your diagnosis • Discuss the goal of treatment and the catalyst for change • Pay attention to side effects, patterns and what does/does not work for you.

• Notice the people who listen well, are curious to understand, have capacity to support you today.

Julie Larson, LCSW – www.julielarsonlcsw.com

UNDERSTANDING SELF-ADVOCACY: EFFECTIVE COMMUNICATION • Prepare for important conversations • Prioritize – use your time wisely • Rehearse out loud – words sound different in your mouth than in your head!

• What do you need to feel comfortable? To begin?

• Set parameters for how long you will spend on an issue

• How will you know you’ve been heard? Understood?

• Create mantras that keep you on focused and clear.

Julie Larson, LCSW – www.julielarsonlcsw.com

MANTRAS TO HELP YOU STAY FOCUSED • My job is to provide accurate, complete information about my condition and my concerns.

• Talking about symptoms is not complaining; its reporting valuable information.

• My goal is to get the best care possible, even if I have to push.

• I have a right to understand my condition and my choices.

• My job is to keep asking questions until I understand.

• I still have concerns. I need you to go over this again, please.

* If that’s too stressful, simply ask a nurse, friend or relative to advocate for you: She is still concerned about…and has questions about….

Julie Larson, LCSW – www.julielarsonlcsw.com

REVIEW YOUR CARE PLAN BEFORE YOU LEAVE • Physicians and nurses are often taught to use the “Teach Back” or ”Show Me” methods in their patient care.

• These methods help with: • Improving patient understanding and adherence • Decreasing patient follow up calls or cancelled appointments • Improving patient satisfaction and outcomes If this is not done in your office, YOU can initiate it with simple statements like: • “We’ve gone over a lot of information today; I want to make sure I have understood you.

These are the top three things I found most important from our appointment.”

• “When I get home, I plan to review our conversation with my partner and will tell him/her…..”

• ”Let me make sure I’ve heard everything correctly…”

Julie Larson, LCSW – www.julielarsonlcsw.com

CHUNK AND CHECK • You do not need to wait until the very end of the appointment to review.

• Chunk and check is a way of reviewing and “talking back” information along the way during your time together.

Julie Larson, LCSW – www.julielarsonlcsw.com

UNDERSTANDING SELF-ADVOCACY PROBLEM SOLVING • Navigating obstacles in your care • Scheduling needs

• Side effect management • Insurance concerns and access to care needs • Awareness of your legal rights and entitlements (workplace accommodations or medical care choices)

Julie Larson, LCSW – www.julielarsonlcsw.com

UNDERSTANDING SELF-ADVOCACY NEGOTIATION & FLEXIBILITY • Collaborating with your medical team (or employer) to find solutions • Align your cancer experience with values or lifestyle that matter to you:

• Autonomy or Independence • Family time • Work continuity • Travel needs • Learn approaches or tactics from other survivors or medical teams that may help you move forward in new/different ways Julie Larson, LCSW – www.julielarsonlcsw.com

BE HONEST • Factors about your personal life are important for the physician to understand so they can accurately assess and guide your care.

• Are you adhering to the treatment plan? Do you have a few cocktails or smoke? Be candid.

• Your appointment is confidential. Your doctor is there to treat your cancer, not judge you.

• Acknowledge feelings of embarrassment and remember, your doctor is human too. They see many many people, you likely are not the first.

Julie Larson, LCSW – www.julielarsonlcsw.com

WHY IT MATTERS? • Practicing self-advocacy helps you find and trust your own voice in the journey.

• Prevents treatment burnout and helps you feel connected to a team • Fosters independence and belief in you (and your body’s) innate resilience • Helps you sharpen self-awareness around your values and listen to your needs today

Julie Larson, LCSW – www.julielarsonlcsw.com