As a TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease and the lows of burnout. In this article, I share my personal journey of advocacy and how it took a toll on my mental health. I also discuss the importance of self-care and the need to prioritize mental health while advocating for a cause. If you’re involved in PKU advocacy or any type of advocacy work, this article is a reminder to take care of yourself so you can be there for others.

PKU Advocacy & Burnout

It’s nice to feel warm. As I write this pretty much the entire US is experiencing the coldest winter… well, at least in recent memory. I was out filming last Friday, and it was just miserable, and we didn’t even have any snow.

But it was a fun day. I was filming some college football at the Independence Bowl, which is held here in town every year and broadcast on ESPN. I filmed some footage earlier in the week that aired on ESPN during the game, but mostly I was there to film the festivities to promote the bowl itself in the coming years.

I ran into some old colleagues from my previous life in TV news, and some former competitors as well. I say “competitors” loosely, because even though we technically were, there’s a bond that is shared amongst many TV photojournalists. There’s a shared experience from working in the field that others just can’t understand.

Anyway, at one point I was chatting with one of them and the conversation naturally drifted to mental health… and also PKU. And so, I found myself standing outside in 10-degree weather, talking with someone I had not seen in years, discussing the two most important topics in my life right now – the mental health toll inflicted upon TV photojournalists… and PKU advocacy. It felt good to talk to someone about something we could both relate to, our shared experiences in the field, but also share my story about living with PKU and why advocacy is so important to me.

But a year ago the last thing I wanted to talk about was PKU. I was completely burned out. It’s one of the many reasons I disappeared from social media for a few years.

Passion for Storytelling

Ever since I produced My PKU Life in 2011, I’ve been pretty open about my life. It’s not something I planned or expected. I was so used to being behind the camera as a TV photojournalist telling other people’s stories. It’s something I was taught in journalism school – you are NOT the story. At least that’s the way it used to be when journalism was more objective, but I digress.

When I shared my story, and people actually listened, I was surprised. The more I heard from my viewers that my story inspired them, the more I decided to open up and share my life. It may sound weird, but since I relate everything back to my experiences working in TV stations it makes sense to me… It felt like becoming an on-air personality on a morning show. I would travel and meet people in our community, and they would say, “I feel like I already know you.”

And so, at a certain point, I decided to put all of my focus and attention on PKU advocacy. I had spent years of my life telling stories in our local community, and working in news is all-consuming. You have time for little else. I guess I took that same mentality and applied it to PKU advocacy. In my mind, I was still a journalist, and PKU was my “beat”. I still consider it the most important story I’ve ever told. I don’t regret that because it led to some amazing experiences traveling the world and making friends in our community.

But over time it took a toll.

Burning Out

Fear is an interesting thing. A few months ago when Hurricane Ian hit Florida I saw some footage on the news and immediately thought, “I wish I could be there covering this.” I told that to a friend who is a former satellite truck engineer and he laughed and said, “Oh, me too!” I rode out a couple of hurricanes and covered the aftermath of some other natural disasters, including Hurricane Katrina, so walking in that world isn’t new to me. I’m not afraid to cover a hurricane.

But I’m terrified of letting people down.

I have this little voice in my head that just screams at me, “You’re not doing enough!” Even when I was the most active in advocacy before my break from social media, when my Facebook page was growing tremendously and I was getting messages all of the time, I would try to help someone and then immediately feel like it wasn’t enough. I know that stems from covering the news and feeling powerless to help. I spent years standing by and doing nothing to help as others were in pain or dying. So when I got involved in PKU advocacy I realized that I could finally help and make a difference.

But that little voice in my head wouldn’t leave me alone. It seemed like no matter what I did, it didn’t feel like I was doing enough. So I pushed myself more. Trying new PKU media projects, constantly engaging on social media, saying “yes” to everything.

Until I ran out of energy. I was completely burned out and didn’t want to even talk about PKU anymore.

A Year of Change for My PKU Advocacy

2022 was a year of tremendous change for me. I began the year in isolation from the PKU community. I end the year with a full and grateful heart. Reconnecting with the PKU community and participating in PKU advocacy again was exactly what I needed.

But it was a hard year as well. I shared my mental health story here on this blog, and in doing so painful memories resurfaced. I’ve spent the last few months on edge. Many sleepless nights. Remembering stories that I covered, sights I can’t forget. Thinking about a former colleague who left photojournalism to become a police officer, and was killed in the line of duty. Coming to terms with my step-sister’s murder, something I didn’t let myself even think about for 24 years. But I’ve realized that in order to move forward in life I have to finally deal with the past.

And yes, I’m choosing to do so publicly here on this blog. It’s a choice I’ve made, and one I continue to struggle with. My friends in the PKU community know that I’m a proponent of people in our community sharing their PKU and newborn screening stories. But now I wonder if they assume that since I shared my story openly here that I think everyone should share their mental health story.

I do not.

That’s an extremely personal decision. Some things are just too personal. Privacy is important. I share openly here, but that doesn’t mean I share everything. Some things are just for my journal.

I share what I can here in the hope that it will help others. Again, I can’t stand the idea of letting others down. So if an experience I’m comfortable talking about can help others, I’m going to share it.

So, after experiencing burnout, and coming through to the other side, what am I doing differently?

I’m focused on self-care.

While I can be extroverted, I am really an introvert. I need alone time to make sense of life. For me, that means reading something uplifting and writing in my journal. Every day.

I also started exercising. At different times, depending on how busy I am, I’m either going for walks, doing yoga, or doing intense exercise.

I’m also rediscovering what it means to have a hobby. Doing something because you love it, not to be productive. For me, that is playing music. I’ve been a guitar player for 27 years, but have also been returning to my first instrument… the piano. I’ve played off and on since I was 9. Even if I only have 5 minutes, I need to sit down every day and improvise some music.

We Are Not Machines

To me, burnout is like being stuck in this loop where you’re constantly busy, constantly active, but feeling like you aren’t getting anything accomplished. Running from one thing to the next but never being able to appreciate any moment as it is happening. It’s how I felt every day when I was working in TV news. Like you’re caught up in this machine that won’t stop running, and you can’t find your way out.

But when we treat ourselves as if we are machines that will never break down, and not human beings who need rest to thrive, we are speeding toward a cliff.

I share what I share here so others won’t make my mistakes. I have lived for most of my life with that mistaken belief that I am a machine that can keep going forever. It was expected of me when I was working in the field. Operating on little sleep, witnessing the worst tragedies imaginable, and yet pretending that I could keep going forever.

This is the year all of that caught up with me. I chose to be open about my struggles, I chose to be vulnerable in public even if it means making others feel uncomfortable, because I want to destroy the lie that we are unbreakable machines.

Every human being has its limits. I’ve seen that up close for over 20 years. Everyone has the capacity for burnout and breaking down. And that’s true in the PKU community as we strive for change. It’s important to fight to make all of our lives better. But we have to take care of ourselves in the process.

Take Care of Yourself

Next year is the 60th anniversary of newborn screening in the United States. And I plan to be very vocal about that, and openly share the importance of newborn screening.

But I’m also learning from my mistakes. And will make certain to pace myself and prioritize mental health.

Whatever you choose to do, to learn, or to fight for in 2023, take care of yourself. We don’t just need you for what you can do for this world. We need you for who you are, most importantly.

So, please take care of yourself. And I pledge to do the same.