Living with Chronic Pain
Becoming Your Own Health Care Advocate
What is patient advocacy?
Patient advocacy is defined as protecting the interest of a patient through various means, including defending their rights, protecting them against inadequate health care, providing support (e.g., financial, legal, emotional, etc.), and contributing to health care decision-making. A patient advocate may also provide caretaking, assist in the navigation of the health care system, and promote patient protection.
What is self-advocacy?
When living with chronic pain, long-term illness, or a disability, it is often necessary for individuals to advocate for themselves in order to receive the care and resources they need. This may include advocating for themselves with physicians, employers, hospitals, pharmacies, or other groups, such as disability resource offices. Successful self-advocacy ensures needs are identified, personal goals are set, and concerns are shared with a physician. Additionally, it can build confidence, ensure informed health care decisions are made, and secure control of ongoing self-care.
Becoming your own health care advocate
Self-advocating can be intimidating; however, there are several ways to ensure it is a simple and successful task. These include, but are not limited to, the following:
- Know your rights. Individuals with chronic conditions or disabilities have equal rights that are protected by law. Understanding these rights is essential for successful self-advocacy. Individuals can research these rights themselves or with the help of a lawyer.
- Keep detailed records. Documentation, such as diagnoses, test results, specific accommodation documents, and medical letters, should be readily available. Keeping these records organized and easily accessible is vital.
- Prepare ahead of time. Prior to appointments or meetings, individuals should know their goals and desired outcomes. Specific needs and discussion topics should be prioritized in case time is limited. Advanced preparation can ensure appointments and meetings are productive, while also reducing nervous energy.
- Ask questions. Individuals should ask questions to help avoid misunderstandings. They should never be ashamed of asking questions or requiring explanations.
- Be assertive. While self-advocating, individuals should be active listeners. They should not be afraid to voice their concerns if they disagree with a statement or decision. They should remain calm but also be firm.
- Get information in writing. The process of writing helps the brain retain information. Sharing information in writing also helps ensure all parties are in agreement. Written documentation is good to have for future reference.
- Believe in yourself. Individuals know what they need. Confidence is an essential part of self-care and advocacy.
Additional sources: Disability Rights Florida and AbleLight