As someone living with chronic pain from fibromyalgia and endometriosis, I enter advocacy because suffering of invisible diseases taught me how absurdly difficult it is to talk about pain at all. Not just in clinical settings, but in everyday life, with friends, colleagues, partners, even at events supposedly designed to discuss it. Speaking about chronic pain often feels like trying to teach quantum mechanics to goldfish, and even specialists sometimes look at you as if you’re speaking a dialect no one has fully learnt.
I began advocating after my first diagnosis in 2022. Initially it was survival, then education, and eventually support, both for myself and others trapped in this heavy landscape of invisibility. The biggest issue is simple: people don’t understand pain, even when they’re utterly convinced they do. As a patient, you hear things like “it’s just negative energy”, “you think too much”, or the timeless classic “fibromyalgia is trendy now”. As if chronic pain were the new spring collection and patients collectively chose suffering as an aesthetic.
This level of misunderstanding is precisely why advocacy became necessary. It’s not a hobby, but a tool for recognition, dignity, education. For me it’s a way of saying: this is real and deserves space in public discourse.
Chronic pain forces you to negotiate your legitimacy every single day. It exists in that awkward borderland between medicine, society, and language, and until a real paradigm shift occurs, we will continue having to prove our pain before anyone even considers treating it. Research on chronic pain seems moving at the pace of an exhausted tortoise looking at biomarkers, so it can be “real enough”. Meantime, pain consumes your body, your relationships, your mental health.
As I grew into the role of patient advocate, and later as a EUPATI Fellow, I realised something crucial: lived experience opens the door, but it’s rarely enough to stay in the room. Many decision-making spaces still expect a specific language, structure, and technical confidence that most patients are never taught. Fortunately, my professional background allowed me to bring that missing structure. I learnt to translate lived experience into data-informed arguments, policy-relevant insights, and clear, actionable contributions. Patient experts can bridge two worlds: the raw authenticity of lived experience and the rigid grammar of institutional decision-making. In rooms where patients are too often reduced to emotional testimonies, I could speak as both a patient and a professional, and that changed everything.
My diagnosis arrived just as I was stepping into adulthood on my own terms. I had plans, autonomy, ambition. Then my body, in perfect dramatic timing, overturned everything. Advocacy became the rope I grabbed before I disappeared through the cracks. It made me rethink who I was becoming. It kept me from shrinking into the loneliness chronic pain loves to cultivate. I wasn’t shouting into a void anymore. I was connecting. I was rebuilding myself. I was no longer alone.
Advocacy wasn’t a career shift, but grew from the need to make pain visible in clinical settings, in research, in regulation, in policy. Even though chronic pain is recognised in ICD-11, lack of knowledge and stigma sticks to it like humidity in August.
What began as an attempt to explain why I couldn’t function like before, became a mission to challenge clinical blind spots, cultural misconceptions, and societal indifference. Pain may be invisible, but we don’t have to be.
So, I advocate because visibility is power. Voice is power. Structure is power. And collective narratives can shift the world in ways silence never will.