I live with eosinophilic esophagitis, often called EoE. It is an uncommon chronic immune condition that affects the esophagus. Living with it has involved appointments, procedures, uncertainty, and the ordinary disruption that happens when your body does not follow the plan.
That experience taught me something useful, but not what people sometimes assume. It did not make me an expert in every uncommon disease. It did not give me permission to interpret another patient’s symptoms, treatment, or prognosis. It taught me to notice the pressure that gathers around a diagnosis.
That distinction became real when I learned about Azeza, a Michigan mother caring for her teenage son Gigi, who has Lafora disease. Lafora disease is a rare progressive neurologic condition. It is very different from EoE. I could not understand Gigi’s medical experience simply because I had spent years navigating my own.
What I did recognize was the surrounding strain. The family’s public fundraiser described accessibility needs, care expenses, mortgage pressure, and the difficulty of keeping daily life stable while a parent focused on a seriously ill child. Those needs were not secondary to the diagnosis. They were part of the family’s lived reality.
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I am a Minnesota creator known online as JoshLilJ. My work brings public attention to individual situations and community needs. In this case, I organized a fundraiser that has raised more than $600,000 for the family. The number is significant, but it is not the most important lesson.
The lesson is that empathy becomes useful only when it respects limits.
People often rush toward a family in crisis with advice, questions, solutions, or a desire to tell the story. Good intentions can still create another burden. A helper can ask someone to repeat painful details, make promises the family never requested, or center the helper’s emotions and effort.
My own health experience made me more alert to those risks. I know what it feels like when a condition becomes the first and only thing people see. I also know that a patient may need practical help without wanting to surrender privacy or control.
For me, helping well required three boundaries. First, I had to separate recognition from understanding. I recognized uncertainty, medical logistics, financial pressure, and family exhaustion. I did not claim to understand Lafora disease from the inside.
Second, I had to focus on what the family publicly identified as useful. The fundraiser addressed concrete needs such as care, accessibility, housing, and daily stability. It did not promise a cure or a solution to every problem.
Third, I had to keep consent specific. Public information can support a first conversation, but it is not unlimited permission. A family member’s participation, private messages, photographs, medical details, and documents each require their own decision.
These boundaries are not obstacles to generosity. They make generosity safer.
Patients and caregivers do not need every supporter to become an expert. They need people who can listen, believe that the practical burden is real, and ask what kind of help is wanted. Sometimes the most respectful response is money for an accessibility change. Sometimes it is help with transportation, meals, child care, or paperwork. Sometimes it is leaving space.
Lived experience can prepare us to notice these needs. It can also remind us how much we do not know.
I do not believe my EoE story explains Gigi’s Lafora disease story. I believe it taught me to approach his family with more humility, to look beyond the diagnostic label, and to turn attention toward needs the family had already made public.
That is the kind of patient advocacy more of us can practice. We do not have to speak for another person to stand beside them. We do not have to share every detail to make a need visible. We do not have to become the center of a story in order to help change its next chapter.
Josh Liljenquist is a patient advocate.
