Skip to main content

Learn to Advocate for Yourself

Be confident, voice your opinion, be firm and be positive, experts tell patients living with rare and serious diseases.

Side view of woman speaking in a megaphone

Standing up for yourself might not come naturally, but it’s never too late to learn to be a strong self-advocate.

It’s a must for anyone who’s managing a serious or rare disease and for those who are caregivers, said CSL Behring’s Dina Inverso, Director of Reimbursement and Patient Engagement. You’ll feel more prepared to self-advocate if you start learning all you can, especially about how to get access to the medical care you need.

Knowledge is power

“Self-advocacy does not mean you have to have ‘all the answers’ but it does mean that you should be educating yourself on where possible resources are like manufacturer programs, patient advocacy groups, support groups and disease experts,” Inverso said.

You’ll have more choices among treatment options if you improve your literacy about health care and insurance, she said. If your care is through an insurer, learn to read an EOB (Explanation of Benefits).

“Strengthening your knowledge tool kit will best prepare you to ask questions, make informed decisions and seek the best possible options for you or your loved one,” Inverso said.

The Mighty, an online patient community, recently offered an interactive webinar about self-advocacy. Leslie Zukor, who led the session, said it’s a life skill that helps patients in multiple settings. It comes in handy when someone needs the courage to seek a second opinion from a doctor. It helps when negotiating relationships with partners and friends, she said. And it’s useful when deciding something simple, like what to have for lunch.

“It’s about taking control of our own situations,” Zukor said.

Take a step-by-step approach

One webinar attendee said it’s difficult for her to be assertive with her doctor. Another has a hard time self-advocating in the hospital. Zukor recommended taking small steps:

  • Decide what you want to accomplish. And be specific. Make a plan that will succeed within the system you are working in. Understand the infrastructure of the system and how to navigate it.

  • Determine what a successful outcome will be – and be prepared to try again. “The worst thing that can happen is they say ’no’ and you have to figure out another way to get what you want,” Zukor said.

  • Maintain your cool, even when you are angry or frustrated. “It’s not productive to start yelling and screaming,” she said. “Think of your tone of voice.”

  • Know that you can tap additional resources, Zukor said. You can request an advocate if you’re being admitted to a hospital. If you need work accommodations, you can ask your health care team to provide documentation to the human resources department.

Check out a NORD webinar

Few are born knowing how to self-advocate, experts said at a 2019 webinar from the National Organization for Rare Disorders (NORD), a Washington, D.C.-based advocacy group.

If you aren’t comfortable speaking up for yourself, practice having difficult conversations with family and friends. Be confident, voice your opinion, be firm and be positive. Believe in yourself and your skills.

“You are the most knowledgeable about you. You are the expert,” said Jill Pollander, director of patient services at NORD.

It can start at a young age for children who have rare diseases. Even kids can learn to recognize what is (and isn’t) a medical emergency so they can speak up at school when they require care.

It’s OK to ask your doctor to slow down and listen, experts said. Have a list of questions ready in case you feel flustered. Be persistent and practice the skills of self-advocacy, especially if you’ve always let parents, partners and caregivers do most of the talking.

“It’s normal to feel overwhelmed. Like everything else we handle on a daily basis, take it one step at a time,” Pollander said.

Watch the full webinar from NORD here: Self-Advocacy and Care Coordination