Self-Advocacy: Speak Up for Your Well-Being

Background:

Everyone can benefit from self-advocacy. For people with chronic illness or chronic pain, self-advocacy involves taking control over their lives and their health care. It includes being assertive with health care providers, stating their preferences, being willing to challenge medical authority, and actively participating in their health care.

However, many people with chronic illness and pain have difficulty advocating for themselves, as their ability to speak up for themselves diminishes when they don’t feel well or don’t have the energy to do so. This skill provides a checklist for you to rate your ability to advocate for yourself and helps you practice writing “I” statements you can use to represent yourself at home, at work, and when interacting with medical providers.

The Skill in Action:

Elaine had fibromyalgia and sometimes felt so ill she needed to stay upstairs in bed for several hours or more. She felt angry and neglected when her husband wouldn’t come up to check on her or see if she needed anything. She was often thirsty or hungry or simply wanted some company. She was eventually able to tell her husband, “When I am upstairs in bed and in too much pain to go downstairs, I would really appreciate it if you would come up and check on me at least once per hour.” Her husband responded warmly, “Oh, of course I can do that. I’d assumed you wanted to be alone left alone like I do when I feel ill.” Problem solved!

Skill Building:

Think about why it is important for to self-advocate when you are ill or in pain. Use the Self-Advocacy Worksheet below to rate the extent to which you feel you can speak up for yourself and to identify what areas might need improvement. Notice the preferred way to self-advocate is to use “I” statements, as shown in the checklist.

Then use the Advocate for Myself Worksheet below and identify some things you want or need on the worksheet. Once you have done so, pick something you listed and write exactly how you will advocate for yourself, including what you need help with, who you will ask, and what you will say to that person.

Refer to Skill 3.1 Working with the Medical Community in the book The Psychotherapy Toolbox for Chronic Illness and Chronic Pain for specific ways you can advocate for yourself with the medical community.

Resources:

This skill is an excerpt from Skill 1.5 in my book The Psychotherapy Toolbox for Chronic Illness and Chronic Pain.

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Client Worksheet 1.5.1 Self-Advocacy

Self-advocacy is being able to communicate your needs, ask for what you want, and represent yourself. Rate how true each statement is for you using a scale of 0 to 10, where 0 = never true and 10 = always true.

__ I feel comfortable asking for what I want.

__ I am not afraid to ask for help.

__ I tell my medical provider what I need help with.

__ I get my needs met.

__ I can problem-solve.

__ I can research my illness and treatment options.

__ I make decisions about what treatment options I want.

__ I speak up for myself in awkward situations.

__ I am comfortable making my own decisions.

__ I feel confident asking people such as my spouse and my doctor for what I want.

__ I feel comfortable telling my doctor about unpleasant side effects of treatment or medications.

__ I can make eye contact when asking for what I need.

__ I know my rights as a patient.

__ I can choose another medical provider if my current one doesn’t listen to me.

__ I use “I” statements to ask for what I need or want.

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Client Worksheet 1.5.2 Advocate for Myself

Use this worksheet to practice coming up with “I” statements that you can use to get your needs met at home, at work, or with health care providers. To begin, identify some of you needs, wants, likes, or dislikes:

1. I need help with ____________________________________________________________.
2. I want you to _______________________________________________________________.
3. I choose ___________________________________________________________________.
4. I need _____________________________________________________________________.
5. I like _____________________________________________________________________.
6. I don’t like _________________________________________________________________.
7. I want ____________________________________________________________________.

Now pick something you listed and write down exactly how you will advocate for yourself, including what you need help with, who you will ask, what you will say, and when you will approach them. Remember to use “I” statements. Here are some examples to help you get started:

• Example 1: “I need help with mopping the floor because doing so hurts too much. I will ask my spouse for help with this and maybe we can get a cleaning person. I will ask them tonight.”
• Example 2: “I don’t like taking this medication because it makes me ache all over. I would like to try a different medication that treats the same issue without this side effect. I will call my doctor’s office tomorrow and explain this.”

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