Empowering Young Advocates: How to Advocate for Yourself as a Child or Teenager with PFIC

By: Lindsey Gram

We hope you enjoy this first post in a two-part series about learning to be your own advocate. Lindsey is a pediatric intensive care registered nurse & medical copywriter based in Alaska. She is a longtime PFIC Network supporter and volunteer.

As a child or teenager with PFIC, I’m sure you can relate: Have you been to a medical appointment and felt invisible? Like a backseat passenger while your doctors and parents take the wheel in the journey of your health? 

When you grow up with a chronic illness, your parents and healthcare providers will always be some of your biggest allies and supporters. And when you were younger, they both had to be in the front seat, taking a super active role in your care. But now, as you’ve gotten older, have you reached the point where you want to be more involved? Do you no longer want your parents doing the majority of talking?

As you approach the transition to adult care, speaking and advocating for yourself will be essential skills. Here’s what we’re going to talk about in this post:  

  • Understanding the ins and outs your PFIC diagnosis
    • We’ll talk about how to ask great questions, who to learn from, and where to find resources for support.
  • Building a strong support network
    • A great support system goes far beyond your family! We’ll talk about how to connect with healthcare providers, parents, peers, and more.  
  • Developing top-knotch communication skills
    • We’ll go over how to speak up, make the most of your medical appointments, and how to effectively talk to your doctors.

Each of these ways to advocate will help you feel seen, heard, and respected. The will also help you get better medical care, and it’s never too soon to start. Let’s discuss some simple and effective ways to put you in the driver’s seat of this car!  

Understanding Your PFIC Diagnosis

The best way to start is by digging deep into your PFIC diagnosis. I know that you’ve learned A LOT about PFIC and the medical system by now- in fact, probably more than most adults will ever know in their entire lives. And no one understands your experience with PFIC more than you. After all, you are the one living it! Here’s how to build on this foundation.  

    1. Ask Questions

    What parts of your care do you not fully understand? And what questions can you ask to understand this better? Let’s use routine ultrasounds for liver monitoring as an example. 

    • Why do I need an ultrasound every few months or years? 
    • What are they looking for? 
    • How does an ultrasound even work?
    • Are there any side effects I need to know about this procedure? 
    • Why is this important? 
    • What will I be at risk for if I don’t do this?

    If you already know many of the answers to these questions, great! Now, start thinking of your own questions about your PFIC diagnosis, medications, lab tests, and treatments. And remember- it’s not only important to know what something is. You need to understand why it is important to you and your health. Now that you’ve got a few questions in mind, let’s find out how to get answers.

    2.Use Our Resources for Understanding PFIC

    You can find a ton of great resources totally on your own! We have a lot to offer at PFIC.org, but here are some of our favorites. 

    • Scroll through the Learn About PFIC section on our website. Here, we go over the PFIC basics, the subtypes of PFIC, diagnosis, treatment, and more. 
    • Tune into our Educational Webinars for a more interactive learning experience. 
    • Check out the Science & Research aspects of PFIC. There’s some pretty advanced and technical information here, so this may be best for older teenagers. Take a look and see if it’s your thing!

        3. Learn From the Pros

        One of the best ways to get the answers to your questions is to go straight to the source! Ask your doctors and specialists questions at your appointments or message them on their electronic portal. We’ll talk more about communicating with healthcare providers later, so be sure to keep reading!

        Your parents are an invaluable resource for your PFIC care and treatment. They’ve been helping you navigate this disease for a long time- maybe longer than you can even remember. They are your biggest supporters, and they’ve learned a ton about PFIC, too. They will be super happy and proud that you want to take a bigger role in your care. Ask away!

        Build a Support Network

        Speaking up becomes easier when you are surrounded by people you can rely on to support you and have your back. Your support network can begin with your family, but it goes far beyond them!

        1. Connecting With Healthcare Professionals

        Building great relationships with your healthcare team is essential! It’s time to begin taking a more active role in your appointments. Aside from asking questions, it’s also important to share your concerns. Be honest and open with your care team and express how you feel. No topic or concern should be off-limits. Your healthcare providers are here to help you!

        They want you to understand your health, disease, and treatment plan. If the information that they give you doesn’t make sense, here’s a tip for what to say: “That doesn’t make sense to me. Can you please explain it in a different way?”

        2. Peer Support and Advocacy

        Getting involved with the PFIC community is a great way to meet other children and teenagers who understand what you are going through! They understand your struggles and frustrations, and you likely share many similar experiences. It’s super simple and easy to do through PFIC.org! 

        Here’s how to connect with other PFIC children and teenagers: 
        Here are great ways to raise awareness & get involved with our PFIC community: 

        These are also great places to make new friends, share your story, learn PFIC information and tips from your peers, and even share what you’ve learned. Rare disease advocacy can be fun, too! You can be inspired by your PFIC peers and inspire them as well.

        3.School & Educational Support

        Your support doesn’t end with your family and the PFIC community. Start talking more about your life with those closest to you! If it’s hard to speak up and talk to doctors and healthcare providers, begin talking more with those you trust. Tell your closest friends or favorite teachers what you are going through. The more you talk about PFIC with those close to you, the easier it will be to speak to those with whom you aren’t as comfortable.

        Developing Communication Skills

        Building on that last statement, here are a few tips to help you feel more confident about talking to your parents, healthcare team, and other adults about your healthcare and PFIC.

        1.Voicing Your Needs & Concerns to Your Parents

        Remember, out of love and necessity, your parents may have taken the front seat in your PFIC journey for quite some time. If you feel it’s time to begin having a more active role in your care, your first step is to tell them!

        Here are a few ways to drop the hint:

        • Begin speaking up more and more with each appointment. Often, easing into the driver’s seat isn’t one big, bold declaration or event! It happens naturally over time as you feel more comfortable talking about your care, asking questions, and voicing your concerns. 
        • Say, “Hey, tomorrow, when we go to see Dr. Smith, I want to be the one to answer most of his questions. And I have a few of my own to ask. How does that sound?”

        Communication with your care team will quickly become a team effort between you and your parents. Remember, even though you are taking on more and more, your parents still need to be involved in your care and up-to-date with any important information for now.

        2. Getting the Most Out of Your Questions

        Remember those questions we talked about earlier? Let’s expand on them even more. Write them down before you go to your doctor’s appointments. You might find it helpful to get your own notebook or binder to organize your questions and healthcare information.

        Share your questions with your family, use your list of questions as a guide when talking to your physician, and jot down some notes when they answer you. Sometimes (and especially with something as complex as PFIC), answers lead to more questions- so if anything else comes up, don’t be afraid to ask for more clarification!

        3.Effective Communication With Healthcare Providers

        Are you wondering how to get doctors to listen to you? When you have something important to say, speak up! Make it a point to speak loudly and clearly, make good eye contact, and don’t even be afraid to throw a hand up in the air! Say, “Hey! I have a question,” or “Wait! I want you to explain that more.” It gets easier the more you do it, and don’t forget- you can always practice talking in front of your trusted friends and family.

        What’s Next?

        Are you feeling up for the front seat? Whether you are ready to go or still a bit hesitant, we hope you have some great ideas for where to start. This is just the first part of our two-blog series on learning how to be your own advocate. If you have any specific questions, feedback, or anything to share with us, please reach out to us!

        Next month, we’ll discuss the importance of setting goals, sharing your story, and empowering others. The journey of self-advocacy isn’t always easy, but remember that you are supported by your family, friends, and the PFIC community. With some time and effort, you will soon be ready to confidently begin steering your own journey!