#2 Natasha on “How to Build a Patient Community” with host, Roi Shternin, from Chronically Empowered

In this series, I am shining the spotlight on a few moments where our founder’s expertise, creative spirit and kindness spill out and show why her resolve to our community is particularly federating. For this purpose, I have chosen a Chronically Empowered podcast, where she is in conversation, as a guest, with patient empowerment renegade Roi Shternin.

#2 What’s in a name? 

Roi feels a tad exasperated by the lack of talk around chronic illness. In a nutshell, “chronic illness is not sexy.” But in stark contrast, InflamMed as a project name is evocative, intriguing, stirring. As Roi puts it, “it has something inside that triggers.” He wants to know about the genesis of the name.

Natasha peels the multiple layers of this name, InflamMed – a portmanteau, the fusion of Inflammation and Medicine, bringing science and empathy together, but also patients and medics. It carries a rallying call to connect and to act.

But it all starts with how Rheumatoid Arthritis makes her feel in the flesh, raw, raging and red. 

“I feel like my body is on fire.” 

‘On fire’ leads to ‘inflamed’ and on to ‘inflammation.’ And that very pain that comes with chronic inflammation, that is so personal to each of us. Natasha explains how measurable physical symptoms and tests cannot communicate what is underneath, that invisible pain and suffering, that “there is no language to it.”

“... it's also the thing that connects us all, people who have, who are suffering in silence. [T]he thing … that is compounding over time.”

“Every single person, right now, is, will, at some point be touched by chronic inflammation.”

She emphasises that to really make society and the healthcare system appreciate inflammation, words need to be put to it. While it is difficult to verbalise pain quantitatively, addressing what brings on inflammation, on the other hand can be acted on within the family unit, among friends, at work. And to do this, “[our] stories [must be told] in a really authentic way.”

“What is it that affects inflammation? It's everything. It's your environment, it's politics. It's what you're eating. It’s invisible. You don’t see it…It’s incredibly lonely.”

And it does not need to be.

As Natasha continues to dig in, bringing us along, it is certain that more layers will wrap around InflamMed, enriching it further.

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Listen to the full podcast on Chronically Empowered.

Listen to or watch Invisible Insights “Challenging Healthcare Norms” for a podcast where the table is turned.