5 Ways to Self Advocate

by Ella Balasa

February 7, 2022

In my health journey, I have experienced times when doctors have treated me as though I don’t understand enough about my disease for it to be worthwhile to explain details to me or to ask what decision I would like to make in my care.

Over time, I have learned how to express my thoughts and be equal partners with my doctor, researchers, and even the companies I work with. I want to share some tips and advice that I have for those who are new to diagnosis or uncomfortable with the idea of self-advocating.

1. Educate Yourself

Knowing about our condition and new research that is happening is the most important part to being someone who can reputably share this information with others. Not only does being informed and knowledgeable about our disease make us better prepared to have conversations with our own doctors, but it also helps us in sharing valuable information with others in our disease community.

2. Get Involved With Advocacy Organizations

Through advocacy organizations, there are more opportunities to share our stories and experiences to benefit the greater community. This helps them to understand the needs of patients and it helps you connect with more people in the community, as well as to share ideas, tips, and to just gain support! This will help to build our confidence in our health experiences and journeys.

3. Create A Platform For Yourself

Whether that’s a website or social media presence, this is a great way for you to be able to share your story, connect with other advocates, and build a more professional advocacy presence if you choose. Of course, sharing your story publicly might not be the right choice for you, and that is OK too. There are other ways to connect by being a part of a patient advisory council at your local clinic or hospital, or simply journaling to help you think through difficult health challenges or express your needs and burdens as a person dealing with illness.

4. Be Open And Talk To Your Doctor

For those that are hesitant to voice your opinion or are new to diagnosis, remember that your doctor wants your opinion and input, it makes their job easier. It also helps them feel more confident in the decision that they are making on behalf of your care. If you are an active participant in the decision-making process, you are being your own best advocate! And that is the most important. This is how we as patients will begin to improve our own care and bring about important changes and advancements in care and treatments.

5. Lastly, Remember That We Know Our Bodies The Best

Give yourself credit for having dealt with your condition long enough for you to know the ins and outs of how your body works. There is a lot of value in this! Our lived experience should be equally regarded as our health care team’s understanding about our disease.

As patients, we deserve support and encouragement from healthcare providers to help us in shared decision-making. I hope these tips serve as reminders and as motivation to take the initiative with your own health care because we are our own best advocates and cheerleaders!

Do you have a story you would like to share on Talkative? Send us a submission! And if you haven’t already, make sure you signup for a free TAMVOES account so you can get started on tracking all of your vitals to stay up to date with your health as it changes. Learn more on the TAMVOES platform.

Ella Balasa

About the Author

Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. She is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections and speaks publicly at conferences, meetings, and to companies about the value of patient voice in research.

She also has a passion for writing; distilling clinical information for patient communities, as well as sharing about the hardships yet triumph that comes with living with a chronic illness. She has been published in journals, news sites, and blogs.

Through opportunities working with healthcare organizations and sharing her journey through writing, public speaking, and her art expression, she aims to affect the healthcare landscape by raising awareness of CF, promoting self-advocacy to patients, and valuable insights to organizations. More of her work and experiences can be found at www.ellabalasa.com.