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You could ask five people how they define Patient Advocacy, and I bet each one would say something different. This broad term can mean many things: asking more questions at your doctor’s appointment; disputing a bill with a hospital; getting an insurance company to reverse a decision; becoming a caregiver to a family member; ensuring you receive the right meds; finding a new doctor; attending a medical appointment with a friend; acting as someone else’s medical proxy; becoming a board-certified patient advocate; or working for a hospital or health care system in the role of a Patient Advocate.

The list goes on, but all of it boils down to one thing: making sure every patient gets the best possible care.

If you don’t know him already, I’m happy to introduce you to fellow Substack writer Chris B. And this is our conversation about how each of us unexpectedly became patient advocates and what that means to us.

Debra: Chris, I’ve been following your work on Chris B. Writes for a while now, and I’m so glad that you reached out to me about this collaboration. Each of us became a patient advocate in different ways, but now we have so many parallel experiences.

For me, I had to learn to become my own best advocate as I navigated Hypertrophic Cardiomyopathy (HCM), an autoimmune sensory neuropathy, and several other diseases on my medical journey. I write about that experience and many more issues at the heart of chronic illness and disability every Friday in my Substack newsletter, What’s Her Problem?

As for you, I know that your son, Bray Bray, who you write about so wonderfully in your Substack, was born with a rare genetic disorder called GNAI1. As a result, he has global developmental delays, nonverbal, non-ambulatory, hypotonic cerebral palsy, legal blindness (CVI), and is prone to seizures. His diagnoses are what led you and your wife to become his advocates.

When did you first realize you had become a patient advocate? Was there one moment, or did it happen gradually over time as you cared for Bray Bray?

Chris: When Bray Bray was 5 months old, he was diagnosed with Infantile Spasms, a rare form of epilepsy in babies. After he was discharged from the hospital that first time in 2015, we knew we’d have to do everything we could to chart his course and get him the Early Intervention Services, care, and equipment he needed. I learned then that it wasn’t easy to navigate the bureaucracy of it all, and I haven’t looked back since.

Debra: I can only imagine how scary and overwhelming that must have been. I think my own patient advocacy journey began around 2006. A primary care doctor told me my symptoms were all in my head, and it was the first time I remember thinking that I needed to get another opinion. When I sought advice from another practitioner and he referred me to a doctor who took my symptoms seriously, it was really validating, and I was proud of myself for following my gut. So, when I was diagnosed with HCM 5 years later, I already had this sense that, hey, if I want to get the best care, I’m going to have to do some legwork. That might mean online research or switching doctors or finding a patient advocacy organization, and it might take time, but in the end it will be worth it. And it was.

At that moment in 2015 when Bray Bray came home after his hospital stay, where did you start? As you said, there’s so much bureaucracy to navigate. What were some of the first resources you sought out, and how did you begin to build the structural support that he needed?

Chris: I give my wife Melanie a lot of credit for getting us organized in those early years. We needed multiple resources from 2015 to 2018, when he was 6 months to 4 years old. In 2015, it was our local social services group to apply for Early Intervention Services — physical therapy, occupational therapy, speech therapy, and vision therapy. Before Bray Bray was school age, we had up to 21 appointments per week at all different times and days of the week. On his one day off, we took him to swim therapy to get him in the water.

After that, we also needed to register with OPWDD in New York State, and then Medicaid for his multiple disabilities. Each application took about 12 to 14 months to navigate and eventually get approved.

Debra: The time commitment is enormous, isn’t it? Both to the weekly appointments and the paperwork. I had a similar experience applying for Social Security Disability (SSDI) benefits. It required a lot of patience and also a lot of organization. I really think my background as a Stage Manager and Managing Director helped me navigate that. Now, instead of being the administrator at a theatre, I’m the administrator of my own medical journey. Same skills, different applications.

What are some of the skills that you already had that you’ve ended up using, maybe in unexpected ways, to advocate for Bray Bray?

Chris: One of the biggest surprises has been realizing how transferable writing and journalism skills are to advocacy. As a writer from an early age, I learned to ask questions, listen carefully, and connect details that other people might overlook. Those same instincts have become essential when navigating hospitals, insurance companies, school systems, and medical teams. I’ve learned that the right question at the right time can change the course of a conversation… and sometimes the course of care.

Storytelling has also become a form of advocacy. Whether I’m writing about Bray Bray on Substack, speaking with doctors, or meeting with educators, I’ve found that facts matter, but stories move people. When others understand who Bray is—not just his diagnosis but his determination and personality—they’re more likely to see the human he is before noticing his wheelchair. I’ve also discovered that persistence is a skill. Journalism taught me not to accept the first answer, and caregiving has taught me that respectful persistence is often what opens doors. Advocacy isn’t always about being the loudest person in the room; it’s about being the one who keeps showing up, keeps asking, and keeps refusing to let your child’s humanity get lost in the paperwork.

Debra: That’s really well said, and I want to dig into a couple of points you made. First, the ability to listen and take in complex information is important, and it’s just as important to use critical thinking to ask follow-up questions. When a patient or their advocate has those skills, I really think it leads to better shared decision-making with medical providers. It can also make it easier to navigate some of the bureaucracy.

When it comes to storytelling, we’re 100% on the same page. Effective storytelling can have a huge impact, and in Bray Bray’s case, those of us who follow you do feel like we know him and are invested in how he’s doing. That creates awareness, as well as a sense of community, I would imagine.

Last year, I completed the Media and Medicine Certificate Program at Harvard Medical School, and that was the central thesis of the program…how to tell stories that make a difference. There’s plenty of data to support the idea that when we talk about a disease more broadly, it may gain a little traction, but once we put a name, a face, and a story to it, more people sit up and take notice. An easy example: if a television show like “ER” or “Grey’s Anatomy” tackles a specific topic via the story of a patient or one of the doctors, there is a correlating spike in online activity where people are looking for more information about that topic.

Persistence is incredibly important, even if some of my doctors might say it’s one of my more annoying qualities. But I would argue that it shows I’m motivated, willing to learn, and not satisfied by the status quo. All qualities I think make a good patient advocate too.

Chris: Persistence is probably the most important tool in our toolbox. Also, I know what you mean about the power of storytelling. One of my favorite shows of all-time is “House MD.” The cases they spotlighted have stuck with me to this day.

What was your biggest takeaway from the Harvard Program? Media and Medicine sounds interesting!

Debra: It was really interesting! My biggest takeaway was that there are so many different modalities we can use to advocate using storytelling. We heard from experts in: op-eds; essays; memoir; choreography; playwriting; poetry; graphic medicine; virtual reality; music; tv; podcasting; documentary; and even data science. Each is an effective storytelling medium, depending on the story you’re trying to tell and who you’re trying to reach with it.

I know poetry is one modality you use. When you write poems, or essays, about Bray Bray, what are some of the daily, unseen challenges that you hope to bring to light?

Chris: Each poem and memoir-style piece (which I’m just starting to be comfortable with) usually has two elements: 1. The raw truth and hard work behind caregiving; and 2. As hard as it is, the blessings I’ve received as Bray Bray’s dad and witness to his incredibly resilient story.

Like many caregivers, I hold two different perspectives: Grieving the life he might have had; and embracing the life he does have. I try to honestly express both in my work, and keep that tinge of hope in the end.

Debra: That honesty and ability to see and share both perspectives must have a positive impact on other families as well. I think the more transparent I am about the realities of my story, the better the feedback is from other people going through something similar. And that’s when I feel like my advocacy is the most successful. Is there a GNAI1 patient advocacy organization? Given the rarity of the condition, how have you found a community to advocate either for or with? And what do you hope that looks like in the future?

Chris: GNAI1 is such a rare condition — Bray Bray is one of under 50 people in the world to be diagnosed with it — that my wife Melanie actually started a GNAI1 Support Group on Facebook. She’s been so good at connecting with other families there, who have joined from all over the world. We are also in touch with the lead researcher at St. Jude’s who authored the study on GNAI1 that helped us discover the true source of Bray Bray’s genetic disorder and all of the related issues behind it. It took us eight years to even have an answer as to why Bray Bray was having so many neurological issues, so we feel like a huge weight was lifted just knowing what he has to begin with. Our hope for the future is continued research and hopefully more progress.

Debra: Kudos to Melanie for taking the lead on starting that group and forming those connections. I’m sure it makes a big difference for everyone who participates in it. Hypertrophic Cardiomyopathy is more common than GNAI1, affecting somewhere between 1 in 200 and 1 in 500 people, but the same principles you mentioned still apply. Having access to the world’s foremost experts on the disease is impactful, and knowing that there is a team of researchers continuing to explore root causes and treatment options provides a lot of hope. I agree that not knowing can be the biggest challenge, so I’m really happy for your family that you have a definitive diagnosis and can move forward with more knowledge in hand.

As we near the end of our conversation, is there anything else about your journey to becoming a patient advocate that you were hoping to share?

Chris: I’d simply like to share my lyrical poem, Smile (Through It)…

Smile (Through It)

You’ll say we can do it

And we’ll smile through it

We’ve carried the weight

Now we’re used to it

You’ll say we can do it

And we’ll smile through it

But this time we mean it—

We’re stronger than ruin

~

Can we fill blank pages

With our quiet rages?

Are we allowed to scream

As we tear at the seams?

Isn’t it apparent?

We are such strong parents

The problem with our capes—

There is no escape

We make it look easy

But we’re not Houdini

I wish that magicians

Could fix rare conditions

~

You’ll say we can do it

And we’ll smile through it

We’ve carried the weight

Now we’re used to it

You’ll say we can do it

And we’ll smile through it

But this time we mean it—

We’re stronger than ruin

~

I look up at the stars

All I see are their scars

They just shine so brightly

For all of us nightly

They put on shows yearly

I see their pain clearly

They just can’t afford breaks

Forced to drive with no brakes

I’d keep singing the blues

But I’m fresh out of clues

Pull on my puppet strings

You won’t like what it brings

~

I pray for forgiveness

In moments of weakness

When faith feels thin

And the night feels the deepest

Now it’s time to rebuild

To reforge and to gild

To loosen the mask

We’ve been trained not to yield

If hope feels thin

We’ll stitch it again

And hold to the truth

That we bend—we don’t end

~

You’ll say we can do it

And we’ll smile through it

We’ve carried the weight

Now we’re used to it

You’ll say we can do it

And we’ll smile through it

But this time we mean it—

We’re stronger than ruin

~

You’ll say we can do it

And we’ll smile through it

We’ve carried the weight

Now we’re used to it

You’ll say we can do it

And we’ll smile through it

But this time we mean it—

We’re stronger than ruin

~

You’ll say we can do it…

Debra: Beautiful. Words that patient advocates, parents, caregivers, and well, just humans can see themselves in. Thank you for sharing this, and thank you again for sharing your journey to becoming a patient advocate. Bray Bray is fortunate to have so many great people on his side!

To stay up-to-date on Chris, Melanie, and Bray Bray’s journey, subscribe to Chris B. Writes.

To receive weekly issues that get to the heart of chronic illness and disability, subscribe to Debra’s What’s Her Problem?

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Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below!

This week’s questions:

If you consider yourself a patient advocate, what was your journey to becoming one? If you don’t, then what does patient advocacy mean to you?

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