Live a better life through community

Becoming a Self-Advocate

open road

Speaking up and advocating for yourself can help you feel strong and take charge of your life. However, it is not always easy to have the confidence to go for it.

Making your own choices, big or small, can make a big difference in how you feel about yourself. This section is designed to help you to find your voice and make informed choices—even when you may not be at your best.

Self-Advocacy means speaking up for yourself, making your own decisions, standing up for your rights and demanding respect from others. Self-advocacy is all about looking out for yourself while still respecting and valuing the role others may play in your life. You can become a self-advocate at home, in your community, in school and in your workplace. You can also be an advocate for yourself when it comes to determining the mental health services and supports that are best for you.

What Are My Rights?

As a young adult you have many rights when it comes to the mental health services and supports that are best for you. These include the right to:

  • Ask for what you want.
  • Say yes or no.
  • Change your mind.
  • Make mistakes.
  • Follow your own values, standards and spiritual beliefs.
  • Express your feelings.
  • Determine what is important to you.
  • Make your own decisions based on what you want or need.
  • Be treated with dignity, compassion and respect at all times.
  • Receive all information about recommend treatments, including risks and benefits.
  • Decide on the services and supports that are right for you and lead you on the path to recovery.
  • Be listened to.
  • Be aware of all your treatment options and their levels of effectiveness.
  • Receive hope and encouragement.
  • Have personal space and time to make decisions.
  • Communicate your concerns, symptoms or thoughts in whatever way works best for you.
  • Involve your family and friends in your treatment.
  • Be yourself.
  • Be safe.
  • Ask for a second opinion without being penalized.
  • Change health care providers.
  • Improve yourself.
  • Express concerns and ask questions.
  • Have a primary decision-making role in your treatment.
  • Be treated as a whole person—not just a mental health condition.
  • Be taught how to help yourself.
  • Receive as much information as possible about the risks and benefits of all treatment options, including anticipated outcomes.
  • Weigh the pros and cons of recommended treatments.
  • Track and evaluate your progress, symptoms and outcomes.

Here are several steps you can take to become an effective self-advocate:


  • educate yourselfEducate yourself. When you speak up for yourself, it’s best to be well informed and to understand the consequences of your choices. Take time to research your mental health condition and treatment options. Meet with experts and mental health advocates if you can. Knowledge is power and will help you make better informed decisions about your mental health. Visit theEducation Yourself resource group to access information about mental health conditions and services and supports.

  • Believe in yourself. Believe in your strengths and believe that you can take care of yourself given the right supports and services. To have the confidence to ask for what you need and want, you have to believe you deserve it and have a sense of self-worth. If you feel your self-worth needs to improve before you can become an effective self-advocate, check out the Building Self-Esteem for Healthy Relationships: A Self-Help Guide in the Relationships resource group.

  • Determine what it is you want and need and share this information with your health care provider and others involved in your mental health treatment. You should always have a say in the development of your treatment plan. Your health care provider should be paying attention to your needs, goals and background. Treatment decisions should be made together. You may want to spend time thinking about what you want for yourself in terms of your health outcomes and treatment goals. Goals may include:

    Reducing symptoms that are most bothersome to you.

  • Living a productive, fulfilling life—not just a symptom-free life.
  • Trying new and alternative treatment options.
  • Lessening or eliminating medications.
  • Managing side effects from medications that interfere with enjoyable activities.
  • Defining wellness for yourself.
  • Educating yourself on your mental health condition.


Think about what makes you feel good about yourself and what life goals you have. It is helpful to share these thoughts with your health care provider and anyone else who supports you. This information

may influence your treatment and others can help you get any resources, support, skills training and guidance you may need to pursue and maintain your happiness and self-worth. Take a look at the Setting Goals Work Sheet and the Express Yourself: Assessing Self-Determination in Your Life on the Taking Charge resource group to help you decide what makes you happy and what you would like to achieve in your life.


Develop power statements. Power statements emphasize that you value the life that you have and that your mental health treatment should support you in living your life. They help you take charge by helping you communicate to your health care provider what is most important to you and what makes you feel most powerful in your life and how your mental health treatment should not get in the way of that. Your power statement may include the personal goals and treatment goals you determined in steps three and four. Here is an example of a power statement: Being a good student is the most important thing in my life and it's vital to my recovery. I am not willing to sacrifice being a good student to my mental health condition or unwanted side effects. You and I must work together to find a treatment that does not interfere with my ability to be a good student.


Share any concerns, questions or preference you have with your health care provider. You should never feel intimidated by your health care provider or think you are wasting his or her time by asking questions. Some questions you may want to ask when your health care provider recommends treatment options, including psychosocial interventions and medications, include:

Why are you recommending this treatment and what are alternative treatments?
What is the goal of the treatment being recommended and will it help me to do the things I most enjoy? Share what those things are.
How will I know if I am reaching my treatment goals?
How does this recommended treatment promote my strengths, capabilities and interests?
What are the risks and benefits associated with the recommended treatment?
Is their evidence or research to support the use of this treatment?
What changes can I expect to see and how long will it take before I see these changes?
How will we measure and monitor progress?
What should I do if my condition gets worse or I do not see an improvement?
How can I reach you after hours or in an emergency?
Is the recommended treatment covered by my insurance and what is the cost?

When your health care provider recommends a medication, here are additional questions you may want to ask:

Are there psychosocial interventions that might be tried before medication is used, or used in combination with the medication, which may lower the required medication dose I need?
Does research support the use of the recommended medication for someone like me?
How will we ensure the medication does not interfere with my life, interests and activities?
How does the medication fit into my overall treatment plan?
What are the risks and benefits associated with this medication?
What is the medication supposed to do?
How and when should I take it?
How much should I take?
What should I do if I miss a dose?
When and how should I stop taking it?
Will it interact with other medications I am taking?
How will we monitor progress, symptoms and safety concerns?
What should I be looking for in changes in behavior and symptoms?
Do I need to avoid any types of food or drink while taking the medication?
Should it be taken with or without food?
Is it safe to drink alcohol while taking this medication?
What are the side effects? How can I best manage them?
Who should I contact with questions about the medication?
What should I do if I have a crisis and am hospitalized?
Who should I contact from your office, especially if someone wants to change my medication?



Remember to stay calm, cool and collected when speaking up for yourself. If you lose your temper, it may make it more difficult to get what you want and need for yourself. Try and treat people with the same dignity, compassion and respect you expect.


If you find that you are having trouble speaking up for yourself, try writing down beforehand what you want to share or ask. Read from this sheet of paper or hand it over. You can also print out and share any of the Work Sheets you complete in the Taking Charge resource group.
Check out the Getting the Most from Your Health Care Provider document in the Taking Charge resource group to learn more about talking to health care providers, resolving concerns and being actively involved with your treatment plan.
As you master advocating for yourself, you may also want to consider advocating on a broader scale. Many young adults living with a mental health condition find that advocating at the local, state or national levels on policies impacting them strengthen their recovery. To learn more about legislative advocacy, visit theEffective State Legislative Advocacy Tips in the Taking Charge resource group.

It can be particularly challenging to express your wishes when you are experiencing a psychiatric crisis. You will likely not feel like yourself or in control of your thoughts and actions—however, even in the worst of times there are ways to let others know exactly what you want and need.

When you are feeling healthy and good about yourself, you may want to develop a Psychiatric Advance Directive to share with your support network, including, in particular, your health care provider.

A Psychiatric Advance Directive (PAD) is a legal document that allows you to give instructions for future mental health treatment or appoint someone you trust to make future decisions about your mental health treatment.  The document is used when you experience a psychiatric crisis and become unable to make or communicate decisions about your treatment. A PAD makes it possible for you to be treated according to your wishes and it also allows for a more informed and open dialogue with your health care provider.

To learn more about PADs and to get started on writing one, visit the National Resource Center on Psychiatric Advance Directives.

You can also create an informal crisis plan to share with trusted family, friends and your health care provider. This plan should include your health information and treatment preferences for when you may experience a psychiatric crisis.  A crisis plan is not legally binding, but it is much easier to create. Check out the Creating a Crisis Plan Work Sheet in the Taking Charge resource group for help in creating a crisis plan to share with your support network.

 

Comments

  • Kelene Jun 3rd

    No matter what the illness or condition is, you shouldn't be afraid or ashamed to speak out for yourself. I make fun of myself all the time because of my schizophrenia, making jokes, even though sometimes it's a very scary illness. But it gets people's attention, and it gets you heard. And sometimes that's what's needed. If you don't have anyone to speak for you, you've got to speak up for yourself.