Being Your Best Advocate

No one knows you better than you know yourself. Whether you’re navigating the complexities of living with cystic fibrosis (CF) or striving to achieve personal goals, being your own advocate is essential. By mastering the skills of self-advocacy, you can ensure that your needs—or those of your loved one—are met in a way that supports both health and quality of life.

Ask for what you want

One of the most essential aspects of self-advocacy is speaking up for yourself. Whether you’re discussing treatment options with your CF care team, requesting accommodations at school, or looking for support in the workplace, making your unique needs heard is essential to securing the care and resources you deserve. Since these decisions directly impact your well-being, it’s within your rights to voice your opinions. Self-advocacy is a learned behavior, so if you haven’t had the opportunity to practice it or observe it first-hand, it may take time to develop the necessary skills and confidence—and that's OK.

Speaking up for oneself will look different person to person, as everyone has different health needs and expresses their needs in their own way. Factors like your age, health condition, employment status, income, and support circle can impact what you need when managing CF. What’s important to remember is to listen to your body and put yourself first. Your voice matters, let it be heard—and loudly!

Be prepared

Take time to understand yourself: One of the first steps in mastering self-advocacy is understanding yourself, along with your values and needs.

To start understanding who you are, ask yourself:

What are my core values?
What matters most to me and why?
What are my most important needs?
What do I need to accomplish my tasks and responsibilities?
What do I need to feel respected and to maintain my emotional, physical, and financial well-being?
What are my strengths and where can I grow?

Communicate your needs: Self-advocacy also requires the ability to communicate what your values and needs are. Before a treatment, appointment, or meeting at school or the office, take the time to list your needs and potential ideas for addressing them. This ensures you're prepped to advocate for yourself effectively. It’s crucial to proactively communicate in order to prevent potential problems in your control. You'll know your communication is being heard when your needs, values, and priorities are reflected in the care you receive.

Do a deep dive into research: Make sure you are armed with the appropriate research and background information. This will not only build credibility and deepen your understanding of your needs, but will also show that you are serious about advocating for yourself. This could include bringing research studies, guidelines, blog posts, notes from previous discussions, or personal anecdotes to your appointment and meetings.

Some answers are closer than you think!

Remember to utilize the people on your care team that are there to support you—like your nurses, social workers, dietitians, and financial counselors.

Don’t give up

It may be a cliché, but you will likely experience resistance or moments where it may not seem worth it to keep advocating for yourself. In these instances it’s important to remember the bigger picture and to keep your eyes on the end result. Persistence is the name of the game—some things may require multiple conversations with multiple people, or seeking additional support elsewhere. Having an internal mantra running through your head like “pursue the purpose” or “stay the path”, can help keep you focused. You can also write down one of these mantras, or create your own, and place it on a sticky note on your bathroom mirror or laptop. You can also set it as your phone wallpaper for a consistent reminder.

Common problems you may run into

You may run into obstacles when advocating for your health and personal needs. Some of these problems could include:

Lack of awareness and understanding about CF from others
Barriers within the healthcare system, like long wait times, access to specialized care, and financial issues
Resistance to accommodate your needs from healthcare practitioners, educators, or employers
Emotional fatigue from constantly speaking up for yourself, especially if you feel like you’re not being listened to
Limited medical or informational resources
Loneliness from feeling isolated while managing your medical and personal challenges alone

“I think knowledge is empowering at any age, especially when you're battling a chronic illness.”

-Julia, actress, singer, and advocate living with CF

Advocating for your loved one

If you’re a caregiver for someone with CF, you provide their first experience of support and guidance in navigating the complexities of their condition. It’s important to demonstrate how to properly stand up and speak up for oneself, while empowering your loved one to take an active role in their care. A couple of considerations to keep in mind when advocating for your loved one include:

Staying in the know: Take charge by educating yourself about CF, stay up to date about new therapies, and be in communication with your loved one’s care team to learn what may be best for them. A great place to start is the CF Foundation website
Get involved: Through social networking and joining CF support groups, you can connect with other caregivers and learn from them. Not only do these communities act as a great source of knowledge, but they also offer support for you as a caregiver.
Communicate with your loved one: Sometimes we think we know what’s best for someone, but the best way to know what your loved one needs is by simply asking them. Find what works for the both of you, whether it’s a daily check-in over breakfast or continuous open communication throughout the day. You can also maintain contact with their educators and care team representatives.

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