For many of us, becoming a patient advocate wasn’t optional
My passion for rare disease advocacy was built in the fire
For some people, advocacy is a choice — a hobby, calling, or passion project they pick up when they have the time, energy, or interest. But for those of us living with rare diseases, chronic illnesses, and bodies that don’t follow the rules, advocacy becomes something entirely different.
It becomes survival.
Never in my wildest dreams growing up could I have imagined that, one day, I’d have to learn insurance language like it was a second career. I never thought I’d become fluent in medical terminology, hospital politics, or prior authorizations. No amount of schooling could have prepared me for how to file an appeal while juggling symptoms that steal my strength. But here I am. Here we are. Reshaping our lives around systems that weren’t designed with us in mind.
A reaction to the harm
Most people probably assume that patient advocates are driven by a simple and innate desire to help. But I became passionate about advocacy because of the things I survived — not in spite of them.
My passion was born in exam rooms where I wasn’t believed. Forged in hospital hallways where my symptoms were brushed aside. Solidified on phone calls with insurance companies, where decisions were made by people who had never met me. Yet they somehow held absolute power over my care.
These weren’t inspiring experiences; they were absolutely traumatizing ones. But they lit a fire in me to do whatever I could to prevent anyone else from going through the same thing alone. We advocate not because we want attention, but because the alternative is silence — and silence has never protected us.
The physical cost
However, there is a truth about advocacy that we don’t discuss enough: It takes pieces of you.
Every denial, every appeal, and every moment you are forced to function as your own attorney, medical translator, and crisis manager takes a toll. For me, and for many others, the stress of the fight has physical consequences. I have experienced flares triggered by insurance battles. More often than not, I’ve had symptoms worsen simply because of the energy required to be heard and taken seriously.
The reality is that our bodies often pay for the battles our voices have to fight.
Because of this, I know people in our community who have become too depleted to advocate anymore. They avoid confrontation not because they don’t care, but because the stress is physically dangerous for them. This is valid. This is real. And this is precisely why those of us who can speak up must do so — to cover for those who need to rest.
We advocate because systems change slowly, and they only change when we force them to do so. We advocate for the children who might inherit our conditions, for the newly diagnosed who are terrified, and for the patients who have no one else in their corner.
As Rare Disease Week on Capitol Hill approaches in February, I find myself thinking not only about how advocacy begins, but also how it evolves. It is a time when we can turn our lived experience into action, sitting down with lawmakers to say, “This is what life really looks like.”
Advocacy isn’t one-size-fits-all
Not everyone wants to show up in a room full of policymakers. We can’t all travel or endure the physical strain of a conference. But if you feel even the slightest tug, the smallest curiosity, or the tiniest spark of “maybe I could be part of that,” I encourage you to explore the organizations within your rare disease community.
Look for groups that educate and uplift you, rather than drain your energy. Learn about the policies that affect your care by reading. Ask questions and connect with others online. Listen as well, because sometimes the best form of advocacy is simply witnessing someone else’s story.
There is space for every kind of advocate: loud, quiet, experienced, overwhelmed, curious, or brand new. You can advocate by sharing your story in a hearing, or by simply staying informed from the comfort of your bed.
Advocacy may not have started as a passion for us; it was an instinct, a muscle memory developed out of necessity. But sometimes, passion is what rises out of everything we’ve endured. And that passion isn’t delicate; it’s earned and lived.
So whether you whisper or roar, your voice matters and makes a difference. When we speak together, even the systems that weren’t designed for us have no choice but to listen.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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