Self-Advocacy Resources
  • Ideas and tips on how to be an effective self-advocate. 
  • Stories of successful self-advocacy experiences.
  • Lists you can share with your healthcare provider and family members highlighting what you wish they understood about vasculitis.
  • Links to reliable websites that can help you increase and deepen your advocacy skills.
  • Information on how to seek a second opinion and how to know if you need one.  

These resources were developed by VOV ambassadors, who, like you, navigate their lives while living with vasculitis.

Advocating for Yourself

You’ve been a self-advocate for most of your life. As a child, you probably advocated for a later bedtime. As a teen, you likely advocated for being allowed to use the family car. Now, as a patient with vasculitis, you must advocate for yourself in the medical world. This world includes long hallways, multiple exam rooms, lots of tests, and a parade of healthcare personnel speaking in what seems to be a different language: medicalese. And, adding to your challenges, this advocacy role starts at a time when you’re not feeling well.

What does effective medical self-advocacy look like? It’s going to a medical appointment with questions at the ready. It’s educating yourself about the latest vasculitis research advances and clinical/survey studies, and the Vasculitis Foundation is an excellent source. It’s listening to yourself about how your journey with vasculitis is going and what you want your future as someone living with vasculitis to be. Complementing medical self-advocacy are emotional/mental well-being and physical activity, both addressed in other sections of the website.

Please let us know what topics you’d like to see included.

Each of us is on a personal journey with this disease, and together we can help each other in our own Victory over Vasculitis.

Welcome to exploring your self-advocacy skills.

Advocating with you Healthcare Provider

How To Advocate For Yourself With Your Healthcare Provider

The 12 Second Rule

How to communicate important information to your healthcare provider.

You’ve Only Got 15 Minutes

How to come prepared to make the most of visits with your healthcare provider.

Be Honest With Your Doctor

How to tell your healthcare provider what they need to hear.

Did You Hear Me?

How to tell if your healthcare provider is listening to you.

Just One More Thing

How to ensure you cover what is most important.

Advocating with Your Healthcare Providers 

Emma

“Very early in my journey I learnt the value of being my own advocate regarding my health and well-being. You are the one experiencing the symptoms and often these symptoms do not have physical signs for the medical specialists to see. It is so important to be your own advocate for your health and well-being as no one else will hold the value of this higher than you do.”

– Emma White, MPA, New Zealand

Additional Self-Advocacy Tips from Emma

  • My rheumatologist has always been supportive of my curiosity and my research; however, he did encourage me to take caution with what I was reading and to raise any questions with him so that he could provide medical feedback based on my condition.
  • Ahead of every appointment with my rheumatologist I make a bullet pointed list of the issues and observations since my last visit, as well as any requests such as specific blood tests I would like done or review of my medications.
  • I also keep a folder of photos on my phone of any physical items that seem unusual, which I go through with my rheumatologist. If there is anything that I need to contact my rheumatologist about between appointments, I am very lucky in that I can email through to the nurses, and they pass this onto them.

Self-Advocacy Videos

Patients Rising

Provides education, resources, and advocacy for people living with chronic illness.

You’ve Only Got 15 Minutes-Make It Count.

Preparing for a visit with your healthcare provider? Make sure you have these ready to go:

  • List of current medications, refill requests, lab tests you need to schedule/discuss.
  • Your main goals for the appointment (no more than three).
  • A summary of how you are doing (be brief and HONEST).
  • Any problems (side effects, insurance, expenses, ANYTHING stopping you from carrying out the treatment plan).
  • List of any questions you have that only the doctor can answer.

Some Possible Questions:

  • Why are you recommending this test/treatment?
  • Why do you think this treatment will work for me?
  • How will we know if the treatment is working?
  • What are the other options?

Ask yourself, is this the right doctor for answering my question?

Before you leave, make sure you:

  • Schedule your next appointment.
  • Know your homework (bloodwork, tests, referrals).
How To Advocate For Yourself With Your Healthcare Provider

The 12 Second Rule

How to communicate important information to your healthcare provider.

You’ve Only Got 15 Minutes

How to come prepared to make the most of visits with your healthcare provider.

Be Honest With Your Doctor

How to tell your healthcare provider what they need to hear.

Did You Hear Me?

How to tell if your healthcare provider is listening to you.

Just One More Thing

How to ensure you cover what is most important.

Advocating with Your Healthcare Providers 

Emma

“Very early in my journey I learnt the value of being my own advocate regarding my health and well-being. You are the one experiencing the symptoms and often these symptoms do not have physical signs for the medical specialists to see. It is so important to be your own advocate for your health and well-being as no one else will hold the value of this higher than you do.”

– Emma White, MPA, New Zealand

Additional Self-Advocacy Tips from Emma

  • My rheumatologist has always been supportive of my curiosity and my research; however, he did encourage me to take caution with what I was reading and to raise any questions with him so that he could provide medical feedback based on my condition.
  • Ahead of every appointment with my rheumatologist I make a bullet pointed list of the issues and observations since my last visit, as well as any requests such as specific blood tests I would like done or review of my medications.
  • I also keep a folder of photos on my phone of any physical items that seem unusual, which I go through with my rheumatologist. If there is anything that I need to contact my rheumatologist about between appointments, I am very lucky in that I can email through to the nurses, and they pass this onto them.

Self-Advocacy Videos

Patients Rising

Provides education, resources, and advocacy for people living with chronic illness.

You’ve Only Got 15 Minutes-Make It Count.

Preparing for a visit with your healthcare provider? Make sure you have these ready to go:

  • List of current medications, refill requests, lab tests you need to schedule/discuss.
  • Your main goals for the appointment (no more than three).
  • A summary of how you are doing (be brief and HONEST).
  • Any problems (side effects, insurance, expenses, ANYTHING stopping you from carrying out the treatment plan).
  • List of any questions you have that only the doctor can answer.

Some Possible Questions:

  • Why are you recommending this test/treatment?
  • Why do you think this treatment will work for me?
  • How will we know if the treatment is working?
  • What are the other options?

Ask yourself, is this the right doctor for answering my question?

Before you leave, make sure you:

  • Schedule your next appointment.
  • Know your homework (bloodwork, tests, referrals).

We want to hear your Victory Over Vasculitis. Click “My Victory” to share your story.

The resources on this page are for you. Tell us what other content you’d find helpful.

Thank you to our Victory Over Vasculitis sponsor