Patient Bill of Rights

Pain Patients Bill of Rights framed
Self-Advocacy: Utilizing the Bill of Rights for People with Chronic Pain

Click here for a printable copy of the Bill of Rights for People with Chronic Pain.

At the NFMCPA our advocacy for policy concerns center on broad topics such as political, government and legislative issues that impact quality of care and the right to adequate pain treatment for millions of people afflicted with fibromyalgia and chronic pain illnesses.  Self-advocacy, on the other hand, centers on the individual with health-related issues that can often hamper their access to care, including a timely diagnosis and better treatment modalities.  This article is meant to offer information about how a person with chronic pain (or a parent of a child with chronic pain) can learn to speak out in order to encourage the medical community and their personal doctors to hear their needs and concerns.  And once those needs and concerns are heard then making changes in their medical care.

Self-advocacy is speaking up for yourself, making your own decisions about your life, learning how to get information so that you can understand it, discovering who will support you in your journey, knowing your rights and responsibilities, solving problems, listening and learning, reaching out to others when help and friendship are needed, and developing self-determination, the freedom to live as you choose and make decisions on your own.  After all, who knows you better than you?

Self-advocacy applies at school, in health care decisions, or when living independently in the community.  Whether you are engaging in discussions with policy makers, choosing to have a medical procedure, or deciding to add a room to your home, self-advocacy gets to the very basic idea of asserting yourself for yourself.  Communication expressed in an effective and respectful manner is imperative for successful self-advocacy.  Communication methods--the spoken word, sign language, presentation technology, etc.--are key to making yourself heard, but it is important to be aware of your body language during your dialogue: 70% of communication is nonverbal.  Eye rolling, frowning, crossing your arms, hands on your hips, and pointing your finger, are likely to lead to misunderstanding of your topic points.  Try to remember to maintain eye contact, smile, keep your arms uncrossed, hands off your hips, and no pointing finger so you appear more open, confident, friendly and approachable.

Learning everything possible about your needs, disabilities, strengths and challenges is the first step in self-advocacy.  It is important to learn your rights as a patient and where you can find assistance, support and information about asserting those rights.

When it comes to your life, you are the one with the most at stake and should have the most control.  It is important that people with chronic pain disabilities  understand everything about their illness, including specific needs and the road blocks to addressing those needs.  As with many other life lessons, the earlier in life people learn to advocate for themselves, the better self-advocacy will serve them throughout their lifetime.  

You can be a successful self-advocate regardless of specific challenges or complex needs.  Discovering role models and peers to guide you along the way will provide valuable insight from others who have experienced similar challenges in their lives. This old Chinese proverb expresses it best: “To know the road ahead, ask those coming back.”  Observing people successfully advocate for themselves helps everyone realize that positive changes can occur for people with fibromyalgia and other chronic pain conditions through successful self-advocacy.  

It is no secret that speaking up for yourself can be intimidating.  It can be scary, especially when you are just starting out, or if you are surrounded by experts who think they know best.  However, the old adage of “practice makes perfect” (well, maybe not perfect, but sufficient) or “the more you do it, the easier it becomes” are good slogans to slip into your daily self-advocacy thought processes.  Being an observer and watching other people successfully self-advocate will help you realize that people with all abilities can achieve success through this process.

Developing self-advocacy skills is a life-long process that needs to be nurtured and built, and continually remodeled to navigate agency services and systems of medical care.   Following are a few tips for developing your own unique self-advocacy skills:

Value yourself and your rights; please refer to the Pain Patient Bill of Rights at the top of this article:
  • Understand that your rights, thoughts, feelings, needs, and desires are just as important as those of others. But remember they are not more important than anyone else’s, either.
  • When in discussions, don’t forget to listen and ask questions! It’s important to understand the other person’s point of view. Sometimes finding a compromise may be the best outcome as long as it doesn’t impact your safety, health, and over all well-being.
  • Believe that you deserve to be treated with respect and dignity at all times, and so doothers.
  • Don’t be afraid to speak up and describe the problems you’re facing.  Beating around the bush just makes the issue unclear.
  • Don’t be afraid to disagree with others, even if it means upsetting the peace.
  • Hold everyone, including yourself, accountable for following through on decisions and actions.

Identify your needs and wants, and ask for them to be satisfied:
  • Don’t wait for someone to recognize what you need or expect others to advocate for you.
  • Create ideas about how you can get your needs met without sacrificing others’ needs in the process.
  • Don’t give up because of red tape, the status quo, or defeat.
  • Don’t accept “NO” from someone who doesn’t have the authority to say “YES.”

Express negative thoughts and feelings in a healthy and positive manner:
  • Allow yourself to be upset or angry, but always be respectful
  • Say what’s on your mind in a way that doesn’t hurt someone else or place blame.
  • Control your emotions as much as possible by rehearsing your idea before formally speaking.
  • Stand up for yourself and confront people who challenge you and/or your rights.
  • Remember that assertive communication is NOT aggressive communication.

Receive criticism and compliments positively:
  • Accept compliments graciously.
  • Allow for mistakes and ask for help.  These are learning opportunities.
  • Accept feedback positively.  Be prepared to say you don’t agree, but don’t become defensive or angry.
  • Sometimes you will have to agree to disagree on certain topics.

Always be ready:
  • Prepare for meetings.
  • Be informed about as much as possible on the topic you’ll be discussing.  Do research, and then listen, so you can gain other perspectives on the issue.
  • Keep records and document all meetings, conversations and correspondence.
  • Collaborate: having partners goes a long way.
  • Analyze problems and provide suggested solutions.
  • Keep an open mind.  Brainstorm creative solutions to problems and challenges.

Advocacy helps you get recognition of your needs and necessary services, and can open doors in your community.  Along with strong communication skills, advocacy knocks down barriers and prepares you for independence.  Most everyone can benefit from working to build self-advocacy skills, even if we already have self-determination and confidence.  

Self-Advocacy materials adapted from the Medical Home Portal:

To learn more about self-advocacy, refer to the NFMCPA website, magazines, newsletters and the organization’s social media opportunities such as Facebook and YouTube.