Self-Advocacy and Mental Health: An Awkward but Necessary Partnership

Self-advocacy. It’s a term that gets thrown around a lot, usually accompanied by motivational phrases like, “Speak your truth!” or, “Be your own hero!” And sure, that sounds great in theory. In practice, though? It’s more like trying to explain your favorite TV show to someone who’s never watched it—frustrating, exhausting, and met with a blank stare half the time.

For those of us with chronic illnesses, self-advocacy isn’t just about asking for help—it’s about navigating a minefield of dismissive doctors, skeptical strangers, and well-meaning-but-clueless comments like, “What did you do now?”

That’s a personal favorite of mine. Every time I show up with a new walking aid or brace, someone assumes I’ve been off on some wild adventure, probably involving alcohol and bad decisions. And sure, in my 20s or 30s, that might’ve been a valid question. But these days? My body is doing all the adventuring for me—no drunken escapades required.

But here’s the thing: self-advocacy isn’t just about educating others. It’s about fighting to be heard and taken seriously, even when the system (and sometimes the people around you) makes you feel like you’re shouting into the void.

When Self-Advocacy Pushes Your Mental Health to the Brink

I’ll never forget one conversation with a private doctor. The NHS had outsourced my care, as they often do, and I found myself explaining my entire medical history yet again. After I finished, he asked, “Are you receiving any financial support?”

At the time, I’d already stopped working two or three years earlier due to my health, with no personal income. I told him, “No, I don’t receive anything because I didn’t know what was happening. How could I explain to the government when even the NHS doesn’t know?”

It was one of those moments that sticks with you, not because it’s dramatic, but because it captures the sheer absurdity of navigating a system that doesn’t seem to have a clue. Here I was, living with two diagnoses—EDS and Chiari malformation—that most NHS professionals either dismissed or pretended didn’t exist. How was I supposed to advocate for myself when even the experts didn’t seem to understand?

It wasn’t just frustrating; it was crushing. I’ve known depression before, but this was something different. It wasn’t just sadness—it was a deep, gnawing doubt that burrowed into my mind. Was the pain real? Was it really happening to me, or was I imagining it? And if it was in my head, could I fix it? That tiny, dangerous glimmer of hope—“Maybe I can fix this if I just try harder”—became a trap I couldn’t escape.

The Cost of Doubting Yourself

Here’s the thing about doubting your own body: it’s exhausting. Instead of listening to what it was trying to tell me, I ignored it. Every ache, every injury, every warning sign—it all went on mute. I pushed myself harder, convinced that if I just kept going, I’d get better.

Spoiler alert: I didn’t. What I did do was turn temporary discomfort into permanent pain. Injuries that might have healed became long-term problems. And my mental health? That spiraled too. I felt like I was collecting injuries the way kids collect Pokémon cards—except instead of “Gotta catch ’em all!” it was more like “Oh look, another ligament tear. Delightful.”

Reclaiming Control Through Self-Advocacy

It took a long time to pull myself out of that spiral. Self-advocacy, for me, became less about fighting the system and more about learning to trust myself again.

The first step was acknowledging something simple but profound: my pain was real. That shouldn’t have been a revelation, but after years of being told, “It’s not that bad,” it felt radical. From there, I started to rebuild:

• Learning About My Conditions: I immersed myself in research about EDS and Chiari, not just to educate others but to understand my own body better.

• Keeping Records: I began documenting my symptoms, flare-ups, and injuries, creating a detailed picture of what was happening to me.

• Finding Support: Connecting with others who shared my experiences was a lifeline. It reminded me that I wasn’t alone in this journey.

• Setting Boundaries: I learned that it’s okay to shut down intrusive questions. Sometimes, the best response is simply, “That’s personal.”

The Connection Between Advocacy and Mental Health

Here’s what I’ve learned: self-advocacy and mental health are two sides of the same coin. When you advocate for yourself, you’re not just asking for better care—you’re reminding yourself that your voice matters. You’re reclaiming a sense of control in a world that often feels overwhelming.

But let’s be honest: it’s not easy. Advocacy can feel like a full-time job, and it’s okay to admit that it’s exhausting. Some days, you’ll feel like you’re making progress. Other days, you’ll feel like you’re screaming into the void. Both are valid.

A Message for Anyone Struggling

If you’re reading this and thinking, “This sounds like me,” I want you to know:

• Your pain is real.

• Your experience is valid.

• You are not alone.

Self-advocacy isn’t about perfection. It’s about persistence. It’s about showing up for yourself, even when the world tries to convince you that you don’t matter. And on the days when it feels too hard? That’s okay too. Rest, regroup, and try again tomorrow.

You’ve got this—and if anyone asks, “What did you do now?” feel free to tell them exactly where they can stick that question. With love, of course.