When You Never Have To Say Goodbye

The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast I’m reflecting on rare disease friendships, and how geography can’t separate us.

When You Never Have To Say Goodbye

The rare disease community is a tight-knit group. I’ve experienced this over the years with my connection to the PKU community. We support each other every day, and I know the same is true of any other gathering of people affected by a rare disease. In the latest episode of Never Give Up: A Rare Disease Podcast I’m reflecting on rare disease friendships, and how geography can’t separate us. The episode is called When You Never Have To Say Goodbye (available on all podcast platforms).

One Quick Announcement

In the last episode of my podcast I said I have a special episode coming soon from the road as I travel to an advocacy event. Well, that journey begins today.

The day I release this episode, I’m getting on a plane. And late tomorrow afternoon I’ll arrive in Birmingham in the UK for the 2023 ESPKU Conference. That’s the European Society for PKU and Allied Disorders Treated as Phenylketonuria. I’ll post a lot of content on social media from the event. So, if you don’t already follow me, my contact info is here on this website.

And the next episode of this podcast will document this journey as I reflect on the power of community in our rare disease experience. And interview some friends about their experience. I’ll be there with some dear friends from the US, but it’s also going to be an opportunity for me to reconnect with friends I haven’t seen since the previous ESPKU conference I attended in 2015. And there will be many people there that I’ve met on social media, but this will be our first time meeting in person.

In that episode, I’m going to try to capture a little bit of the magic that happens when you get people together who are affected by the same rare disease. And that instant bond you often feel.

I spoke at the 2015 ESPKU Conference in Berlin, and while there I also produced this video for them. It’s an older video, but it captures the essence of what attending a PKU conference like this is all about. The podcast episode I’ll produce at this year’s conference will feature as many interviews as I can capture. And I’ll also introduce you to three friends who will also be there. I plan to share the episode soon after I return, on October 24, 2023.

So, that episode won’t be recorded in my studio. It’s going to be from the road—while I travel, from the conference, in the hotel, anywhere I can get a few moments with my microphone and capture some thoughts as things are happening.

But today, I want to share a brief reflection with you. Something I thought about after the last big PKU conference I attended here in the United States.

Rare Disease Friendships – Geography Can’t Separate Us

Sometimes when I watch TV or a movie I’m able to relax and just enjoy it. But often, I find myself thinking about the story and applying the themes to my life.

Recently I was watching an episode of Chicago Fire. If you’re not familiar with it, the show follows… Well, a group of firefighters in Chicago.

In this episode, one of the main characters was leaving the show—moving across the country. As this group of friends gathered at a going away party, you could see the grief in their eyes. Their friend was leaving forever, and life would never be the same.

For some reason, that scene stuck with me. I haven’t been able to get it out of my mind. And recently, I realized why.

I’ve spoken a lot on my podcast and on this blog about why the 2022 National PKU Alliance conference meant so much to me. Because of the pandemic and other commitments before that, I had not been to a conference in 2016.

All week, even though I was privately battling depression and anxiety—one of the worst resurgences of Post-Traumatic Stress Disorder that I had experienced in years—I was in the company of friends.

I’ve previously shared about my battle with Post-Traumatic Stress Disorder (PTSD) related to my experiences as a TV Photojournalist. That story can be found in an episode from Season 1 called Regaining Hope: My Journey to Rare Disease Advocacy. But if you’d like to read more information about PTSD and how it affects journalists, read this article from the DART Center for Journalism and Trauma: Covering Trauma: Impact on Journalists.

I hung out with dear friends whom I’ve known for a long time. And finally met others in person I had only known on social media.

I heard someone say this at the conference, and it’s so true—all that PKU adults want to do is get together and talk. To be at a table with people who understand your life—without having to speak a word—it’s an indescribable feeling.

These are friends that feel like family to me. We are scattered across the country—across the world—yet we talk to each other all the time.

We’ve figured out a way to do life together even though we live far apart.

On that last day of the conference, after everything was over, a large group of us went to lunch together. Then, we went for a walk down along the riverfront.

I didn’t want it to end.

Yes, I do a lot of work in PKU advocacy. Many of us do. But at the end of the day, we are all just people living with PKU, trying to make the best of our rare disease experience. We might have work that we do in our community, but we also need support as we live our PKU lives.

That support is essential. And on the last day of a conference like that, you can feel sad. Things are winding down, and everyone is preparing to go home.

And you realize, “I have to say goodbye to these people soon.”

Recently, I heard someone say they were at an event in our community, observing how we interact with each other. And they were surprised to hear that we often live thousands of miles apart. Because we are so close to each other.

The PKU community is a tight-knit group. We support each other. Encourage each other. Fight for each other.

Geography can’t separate us.

And I see now how this is also true in the wider rare disease community. Yes, the world of rare diseases is quite large. There are over 10,000 rare diseases— hundreds of millions of us, across the world (Source: National Organization for Rare Disorders).

But there are countless opportunities to connect with others, even if they don’t share your rare disease.

So, when I think back to that scene from Chicago Fire, of those friends saying goodbye…

And then I think about my friends in the PKU community… Those I work with in advocacy… Those I chat with on social media… Those dear friends I turn to when times are tough…

I realize that we never have to say goodbye.

I will be at the ESPKU Conference producing the podcast episode and sharing content on social media—content that will be sponsored by Ajinomoto Cambrooke. They are well-known in the PKU community as a manufacturer of low-protein foods and metabolic formula. Recently, I shared a sponsored post on this blog where I shared my tips for traveling with PKU formula. If you’d like to follow me during the trip, my social media info is on the right sidebar of this page.