Life with MS

Empower Yourself Through Self-Advocacy

By MSF Staff

What is self-advocacy?

Self-advocacy is the ability to recognize, understand, and effectively communicate your needs to other people, including friends, family members, social workers, and medical professionals. Being an advocate for yourself means being actively involved in getting what you want and need.

Knowledge and education are the keys to successful self-advocacy. The more you know, the more you understand, and the better you can explain things to others. But knowledge is not attained overnight, and becoming a successful self-advocate is an ongoing process. So, be patient with yourself.

Know yourself

The most effective advocacy tools are your voice and your experiences. But in order to use these tools in the most compelling and powerful way, you must first get to know yourself by reflecting on questions like these:

  • What are my needs?
  • What are my strengths?
  • What are my limitations?
  • How do my limitations affect my life?
  • What is my preferred method of communication?
  • Do I prefer to talk to people, write letters, or send e-mails?
  • Do I need to write things down in order to remember them?
  • Am I assertive?
  • Do I need to become more assertive?

Take time to think about these questions and answer them carefully. The answers will provide the blueprint for your unique style of self-advocacy.

Know your rights

Besides getting to know yourself, you need to know your rights. What are your rights in the doctor/patient relationship? What are your rights in terms of privacy? Familiarize yourself with the Americans with Disabilities Act (ADA), the Fair Housing Amendments Act (FHAA), and your health insurance coverage. Are you eligible for social security disability insurance (SSDI)? Contact your local advocacy organization or call the MSF. They can supply you with information and additional resources. If you don’t know your rights, how will you know if they’ve been violated?

Do your homework and be specific

Be specific in your requests and do your homework before approaching the person or agency that can help you meet your needs. For example, suppose you feel physical therapy would be beneficial for you. But your doctor has not given you a prescription or even discussed it with you.

If you’ve done your homework, you can say, “Doctor, I know that physical therapy would be beneficial for me. When dealing with a chronic disease like MS, maintaining function on a daily basis is critical. Studies show that appropriate physical activity, as prescribed by a physical therapist, significantly improves MS symptoms. Not only does it boost attitude, increase energy, and enhance quality of life, but it can also improve strength, flexibility, endurance, and bladder function.”

Come armed with information to support your stand! This will certainly cause your doctor to sit up and take notice. Obviously, you are a force to be reckoned with, as opposed to another patient who says, “Doctor, what do you think about physical therapy?” Discover what your options are and what is working for others. Being an effective self-advocate is empowering!

Assert Yourself!

Maybe you are shy or have a speech impediment. Perhaps you have cognitive issues that make it difficult for you to concentrate or remember certain words. That’s okay. There are things that you can do to simplify self-advocacy.

First, have a clear idea of what it is you want and why you want it. Role-play or rehearse with a friend or family member. You can even practice in front of a mirror or while driving in your car. Remember to speak clearly and to maintain eye contact as much as possible. Don’t rush. Take all the time you need. Busy professionals can make you feel hurried, but only if you allow it. You are paying for their services and time. If you feel rushed, say so, and request more time.

An effective self-advocate must also learn to recognize the ideal time for speaking up. Rather than broaching a time-consuming issue at a possibly inopportune moment, why not mention that there is something you need to discuss and ask when would be a good time to talk? Then, follow-up!

When the person handling your request explains something to you, rephrase the words to be sure you understand. Be respectful. Keep your voice at a reasonable level and be aware of your body language.

If at first you don’t succeed

Getting information or getting your needs met can be daunting! When one approach doesn’t work, try another. Be creative! If the conversation doesn’t go as you had hoped, write a letter or e-mail. Ask a friend or relative to help you. Speak to others with MS and find out what worked for them.

If your needs are not being met, do not get angry or incite an argument. If you feel that you aren’t getting anywhere, ask to speak to someone else, i.e. a supervisor, nurse, or associate. Be persistent!

If you still fail to accomplish your goal, rally some support. Don’t be afraid to take your issue or complaint to the next level. There are laws to protect your rights.

Dos and don'ts of self-advocacy

  • Get to know yourself, acknowledge and accept your strengths and limitations.
  • State your purpose or need and be specific.
  • Make eye contact.
  • Start at the top. Get the name and phone number of the person in charge. This will save you the aggravation of explaining things to someone who is in no position to help you.
  • Be courteous and direct.
  • Be conscious of body language and tone of voice.
  • Keep a file or record of all correspondence.
  • Don’t ask “yes” or “no” questions. Instead, ask questions that generate dialogue.
  • Don’t make personal insults, accusations, or threaten lawsuits. Be persistent.