Empowering Young Advocates Part 2:

How to Advocate for Yourself as a Child or Teenager with PFIC

By: Lindsey Gram

This is the second post in a two-part series about learning to be your own advocate. Read Part One here. Lindsey is a pediatric intensive care registered nurse & medical copywriter based in Alaska. She is a longtime PFIC Network supporter and volunteer.

We’re thrilled to return for Part Two of our advocacy blog series! This month, we’ll talk about the importance of setting goals, sharing your story, and empowering others. These are all awesome and impactful things you can do to advocate for yourself. 

But first, how has the last month been going? Have you accomplished anything that you are proud of? Do you feel yourself moving closer to the driver’s seat of your car? Let us know some of the ways you have advocated for yourself- we’d love to hear what you are up to!

Setting Goals for Your Health

Did you know that the simple act of writing down a goal makes you far more likely to achieve it? As you become more responsible for your own health, there are many great goals to have. Health goals can be as simple as eating healthy food, drinking enough water, and exercising. They can be about PFIC, too.

1.What are a Few PFIC Related Goals?

Think about a part of your medical care that you can start doing on your own. Here’s a few examples:

  • Set an alarm to take your morning medications.
  • Ask a question at your next doctor’s appointment. 
  • Call to make your own medical appointment- but have your parent on speaker phone to help, if needed! 

The options are endless for setting goals. Think about where you can begin, and go from there- you may be surprised by what you come up with!  

2. How to Set An Achievable Goal

Setting a HUGE goal is admirable, and the sky is the limit! But sometimes, giant goals feel SO far away that it is hard to know where to start. Because of that, breaking a large goal down into smaller, easily achievable goals can help get your momentum going. Start small and build your confidence by tackling a few more manageable goals first.

3. Celebrate Your Progress

When you reach a goal, take some time to celebrate your accomplishments! What are some of your favorite ways to celebrate? You should be proud of the hard work you are putting in to play a larger role in your health. And don’t forget, this is really hard work. Your family, friends, and PFIC community are rooting for you and supporting you!

Sharing Your Story

Your story is powerful. It’s totally yours, and completely unique to you. You never know what parts of your struggles or triumphs might click with a child or teenager who has a rare disease. These human connections make celebrations sweeter and difficult times more tolerable. Can you think of a time when someone’s story inspired you?

1. Advocacy Through Personal Stories

Here at PFIC.org, we’d love to hear your story! If you have something you’d like to share with the PFIC community, you can send it to us here. If you want to share your artwork and photos, we love that too! 

  • Click here to read stories from PFIC children, teenagers, and families.
  • We love video stories, too! You can check them out here
2. Participating in PFIC Awareness Campaigns

One of our favorites is PFIC Awareness Day, which is on October 5th. Check out what our Board President has to say:

We take a rare topic, a rare cause, and a rare disease and make it known. We go from doing life on our own to doing life in community.” -Walter Perez

What is a part of your life with PFIC that you wish more people knew about? Or what have you learned about PFIC that could help someone else? It’s never too soon to start getting ideas for the next PFIC awareness campaign. Don’t forget to check out our past events if you need a few ideas or want to see what we’ve done in the past!

Empowering Others and Yourself

One of the best parts of this is that empowering others also empowers you. While you may feel like you have a lot to learn before you are ready for the driver’s seat of your health journey, you are truly a PFIC expert. When you share your knowledge and experience with others, your confidence will grow. You will probably be surprised how much you know!

1. Encourage Other Children and Teenagers with Medical Conditions

You have a unique and valuable perspective from your experiences with PFIC. And, you know just how challenging things can be sometimes. Think of a few other kids or teenagers at school or in your community who have a rare disease or health condition.

Reach out to them and start a friendly conversation, or offer to lend a hand if you notice they may need help. Start sharing your story with them- and ask them about theirs, too!

2. Become a Peer Mentor

If you want to take another step in your PFIC advocacy work, think about becoming a peer mentor. A peer mentor has a shared lived experience and understands the unique struggle of PFIC. They provide a special kind of support that can help empower children and teens to feel ready to tackle the challenges of living with the disease. P.S.- We are looking for, and offer peer mentors for families and caregivers, too! If you want to connect with a peer mentor for support, contact us here.  

Be Heard

Cedar, a twelve-year-old with PFIC, has learned a thing or two about advocating for herself over the years, and she wants to support you as you learn to be your own advocate. Here’s what she has to say:

“Is there something important that you are concerned with that some people are not noticing or mentioning? Well, then voice your concerns! What are some ways you would like to voice your opinion? Is it making a short speech at a conference or fundraiser? Is it writing or drawing something for awareness day? Or is it speaking to your doctor about how you feel about something? Even if you feel a little nervous that people won’t hear you, sometimes you just have to honestly voice your opinions because these nice people’s jobs are here to help you. You should have a voice!”

What’s Next?

We’d love to hear how your advocacy journey is going! Do you want to share how you are beginning to take control of your PFIC journey and advocate for yourself or others? There are TONS of ways to do this. Over the last two months, we covered learning about PFIC, building a support network, working on communication skills, setting your own goals, sharing your story, and empowering others. 

We look forward to seeing your confidence grow as you take the next steps in your PFIC journey. And always remember, you have a huge community supporting you. Let us know what you’ve been up to!