Advocating for yourself
When I used to think about the word Advocacy, my mind would generally think about politics, global concerns, injustice.
After all, advocacy is defined as “pleading on someone’s or some cause’s behalf”.
But before advocacy can truly be effective in those kind of ways, we need to learn to advocate effectively for ourselves.
Self-advocacy is the ability to communicate what your needs are.
It’s being able to describe your condition concisely while knowing you owe no one an explanation.
It’s partnering with medical providers in finding the best course of treatment for your specific needs.
It’s being informed and confident when dealing with bureaucracies like insurance companies and health care systems.
It’s having healthy boundaries with family and friends, so you can say no without guilt, please without shame, and thank you with true gratitude.
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. Additionally, it can build confidence, ensure informed health care decisions are made, and secure control of ongoing self-care.
What is patient advocacy?
Patient advocacy is defined as protecting the interest of a patient through various means, including defending their rights, protecting 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. There may be times when self-advocacy is not enough and finding support from a patient advocate is necessary. Hospitals frequently have patient advocates on staff, and you can also find freelance patient advocates who will support someone faced with a complex medical or legal bureaucracy. However, a patient advocate could also simply be a friend or family member who has been informed of the needs and challenges faced by a patient and has stepped up to support them in getting their needs met.
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:
10 Tips for Patient Advocacy
1. 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 or professional patient advocate.
2. Keep detailed records.
Documentation, such as diagnoses, medications, treatments, test results, specific accommodation documents, and medical letters, should be readily available. Keeping these records organized and easily accessible is vital. Many health care systems and medical offices offer online portals or apps where individuals can view their appointments, prescription refill requests, vital signs, test results, and other important information. It is also helpful to obtain a CD of any MRI’s or CT scans. This allows individuals to be committed to their health care by reviewing this information, asking questions when needed, or pointing out inconsistencies or errors.
3. 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.
4. Ask questions.
Individuals should ask questions to help avoid misunderstandings. They should never be ashamed of asking questions or requiring explanations. If a provider does not have an adequate answer, ask who is the best person to get the information you need. Frequently nurses are an excellent source of information and can guide you to the right people for answers.
5. Do research.
Individuals who are able should research their diagnoses, treatment options, needed tests, future procedures, and medications. This can be done at a local library or online using only reliable and professional websites. A provider may offer a reliable website for research purposes. This can help individuals understand medical terms used by professionals or the aspects of treatment described.
6. Be assertive.
While self-advocating, individuals should be active listeners, focusing on what a provider is saying rather than mentally preparing questions while the provider is speaking. They need to avoid letting emotions overwhelm the situation. 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.
7. 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. Other options include asking if the provider is willing to have the appointment recorded (depending on the legal status of recording in the area), or take a family member or friend as a note-taker.
8. Believe in yourself.
Individuals know what they need. The patient is most often the best source of information about what is going on in their body. Confidence is an essential part of self-care and advocacy.
9. Practice the three P’s.
If phone calls or messages are not being returned or requests are not being fulfilled, individuals should practice the three P’s: being PATIENT, being PLEASANT, and being PERSISTENT. Medical professionals need a reasonable amount of time to respond to messages and requests. However, if an excessive amount of time has passed, individuals should politely and pleasantly repeat the request or ask if there is someone else who can assist them. Individuals should persist until the need is met.
10. Consider this relationship as a partnership.
Most providers truly want to see their patients health improve. Avoid adversarial comments and attitudes. Give your provider the respect they deserve, and expect to be treated with respect and dignity. When you come to a provider prepared and equipped to have an informed discussion, you will see a difference in how you are treated and how the quality and effectiveness of the appointment improves.
After all, advocacy is defined as “pleading on someone’s or some cause’s behalf”.
But before advocacy can truly be effective in those kind of ways, we need to learn to advocate effectively for ourselves.
Self-advocacy is the ability to communicate what your needs are.
It’s being able to describe your condition concisely while knowing you owe no one an explanation.
It’s partnering with medical providers in finding the best course of treatment for your specific needs.
It’s being informed and confident when dealing with bureaucracies like insurance companies and health care systems.
It’s having healthy boundaries with family and friends, so you can say no without guilt, please without shame, and thank you with true gratitude.
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. Additionally, it can build confidence, ensure informed health care decisions are made, and secure control of ongoing self-care.
What is patient advocacy?
Patient advocacy is defined as protecting the interest of a patient through various means, including defending their rights, protecting 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. There may be times when self-advocacy is not enough and finding support from a patient advocate is necessary. Hospitals frequently have patient advocates on staff, and you can also find freelance patient advocates who will support someone faced with a complex medical or legal bureaucracy. However, a patient advocate could also simply be a friend or family member who has been informed of the needs and challenges faced by a patient and has stepped up to support them in getting their needs met.
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:
10 Tips for Patient Advocacy
1. 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 or professional patient advocate.
2. Keep detailed records.
Documentation, such as diagnoses, medications, treatments, test results, specific accommodation documents, and medical letters, should be readily available. Keeping these records organized and easily accessible is vital. Many health care systems and medical offices offer online portals or apps where individuals can view their appointments, prescription refill requests, vital signs, test results, and other important information. It is also helpful to obtain a CD of any MRI’s or CT scans. This allows individuals to be committed to their health care by reviewing this information, asking questions when needed, or pointing out inconsistencies or errors.
3. 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.
4. Ask questions.
Individuals should ask questions to help avoid misunderstandings. They should never be ashamed of asking questions or requiring explanations. If a provider does not have an adequate answer, ask who is the best person to get the information you need. Frequently nurses are an excellent source of information and can guide you to the right people for answers.
5. Do research.
Individuals who are able should research their diagnoses, treatment options, needed tests, future procedures, and medications. This can be done at a local library or online using only reliable and professional websites. A provider may offer a reliable website for research purposes. This can help individuals understand medical terms used by professionals or the aspects of treatment described.
6. Be assertive.
While self-advocating, individuals should be active listeners, focusing on what a provider is saying rather than mentally preparing questions while the provider is speaking. They need to avoid letting emotions overwhelm the situation. 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.
7. 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. Other options include asking if the provider is willing to have the appointment recorded (depending on the legal status of recording in the area), or take a family member or friend as a note-taker.
8. Believe in yourself.
Individuals know what they need. The patient is most often the best source of information about what is going on in their body. Confidence is an essential part of self-care and advocacy.
9. Practice the three P’s.
If phone calls or messages are not being returned or requests are not being fulfilled, individuals should practice the three P’s: being PATIENT, being PLEASANT, and being PERSISTENT. Medical professionals need a reasonable amount of time to respond to messages and requests. However, if an excessive amount of time has passed, individuals should politely and pleasantly repeat the request or ask if there is someone else who can assist them. Individuals should persist until the need is met.
10. Consider this relationship as a partnership.
Most providers truly want to see their patients health improve. Avoid adversarial comments and attitudes. Give your provider the respect they deserve, and expect to be treated with respect and dignity. When you come to a provider prepared and equipped to have an informed discussion, you will see a difference in how you are treated and how the quality and effectiveness of the appointment improves.
Self-advocacy ensures that individual needs are met. Effective healthcare actions typically differ per individual. Being a self-advocate helps ensure that healthcare is tailored for the individual, meets their specific needs, and reflects their goals, values, and preferences.
Self-advocacy can lead to improved health outcomes. Individuals who self-advocate ask questions when something is not understood, become actively involved in treatment decisions, locate and utilize support resources, and seek second opinions when needed. A person who self-advocates is also more likely to expect solutions to medical problems and have higher expectations for care, as opposed to accepting a problem or a subpar solution.
Self-advocacy allows a person to stay in control of their life as much as possible. Individuals with chronic conditions or other health concerns often experience times of uncertainty and situations that may be out of their control. Self-advocacy launches a more positive outlook by creating authority of oneself instead of helplessness.
It can help to think of your health providers as partners in your care. Your role in the partnership is to talk openly and honestly about your symptoms, how treatment is working for you, and ask follow-up questions when needed. It also includes taking care of your body daily, with choices that improve your overall health.
Open communication ensures you and your treatment team have as much information as possible when considering how to manage risk factors and treatment options. This means providing a detailed health history, and learning as much as you can about your diagnosis.
Open communication ensures you and your treatment team have as much information as possible when considering how to manage risk factors and treatment options. This means providing a detailed health history, and learning as much as you can about your diagnosis.
Preparing for Appointments:
Other ways to advocate for yourself include being prepared for any appointment, whether it’s a mental health treatment visit or a routine annual physical. Make a personalized medication card and write down any questions you have about dosages or side-effects. This will help you better communicate your needs and how treatment is working for you.
Setting Goals:
Another important way to take an active role in your own health is to care for your body with mindful choices that can improve your wellbeing.
Think about setting one or two reasonable goals that can help manage your symptoms and lead to better overall health. If your goals seem too broad, break them down into steps that are easier to achieve. For example:
I would like to...
Understand what treatment options I have
Sleep better
Better understand my symptoms and how to cope with them
Better understand how to manage my medication
Eat healthier foods
Exercise more, or get motivated to start exercising
Make social connections with others
Feel hopeful again
As you begin to create new habits, you will also see progress in how you feel. This can help motivate you to set and reach another goal, building on each successful step.
There are many ways to achieve medical self-advocacy. Taking an active role in your care helps you and your providers work together, with a clear focus on improving your mental and physical health.
Other ways to advocate for yourself include being prepared for any appointment, whether it’s a mental health treatment visit or a routine annual physical. Make a personalized medication card and write down any questions you have about dosages or side-effects. This will help you better communicate your needs and how treatment is working for you.
Setting Goals:
Another important way to take an active role in your own health is to care for your body with mindful choices that can improve your wellbeing.
Think about setting one or two reasonable goals that can help manage your symptoms and lead to better overall health. If your goals seem too broad, break them down into steps that are easier to achieve. For example:
I would like to...
Understand what treatment options I have
Sleep better
Better understand my symptoms and how to cope with them
Better understand how to manage my medication
Eat healthier foods
Exercise more, or get motivated to start exercising
Make social connections with others
Feel hopeful again
As you begin to create new habits, you will also see progress in how you feel. This can help motivate you to set and reach another goal, building on each successful step.
There are many ways to achieve medical self-advocacy. Taking an active role in your care helps you and your providers work together, with a clear focus on improving your mental and physical health.