Tag: chronic illness
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New Study Shows Lasting Impact of Being Dismissed by Healthcare Providers
As a patient advocate and author of How to Be a Badass in a Broken Healthcare System, I often find myself navigating the complexities of medical appointments with a sense of purpose. Yet, as I approach a new patient visit in the coming days, a familiar anxiety settles in. Despite my advocacy background, I can’t…
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Quit Doing This One Thing in Your Medical Appointments
I used to think that if something was wrong with my health, I’d just go to the doctor, they’d figure it out, and I’d get better. Easy peasy. That belief lasted until 2019, when my body started glitching. Pins and needles, tingling, and patchy numbness in my hands and feet started one morning and wouldn’t…
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The Road Less Traveled: Navigating a Rare Disease Diagnosis
It took me five neurologists over five years to finally get diagnosed with my rare disease: seronegative myasthenia gravis (MG). MG is a chronic autoimmune disorder that messes with your neuromuscular junction, where your nerves meet your muscles. It causes muscle weakness and fatigue. It’s rare—affecting about 1 in 10,000 to 1 in 20,000 people…
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3 Truths About “Why Me” Moments
Hi, friend. I see you over there, drowning in the existential soup of “Why me?” And listen, it’s valid. Chronic illness hit you like a meteor, and now you’re just trying to figure out how to dodge the next one. I get it. The thing is, I care about your “why me” because it’s part…
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Why the Name Change from Sjögren’s Syndrome to Sjögren’s Disease Is a Big Deal
Cue LL Cool J and my bad rapping and join me in chatting, “Don’t call it a syndrome!” Ok, bad pun out of the way… In 2024, the global Sjögren’s community dropped a truth bomb: they officially renamed Sjögren’s Syndrome to Sjögren’s Disease. And I, for one, couldn’t be more thrilled. At first glance, it…
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This One Mistake Could be Stalling Your Chronic Illness Journey
Quick storytime, friends. A real experience from one of my appointments. Neurology PA: I don’t understand why you are here. Me: I have been having progressing episodes of leg weakness for over a year. My neuromuscular neurologist did an EMG, but it was normal, so he no longer wanted to explore things with me. I…
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Are You Medically Gaslighting Yourself?
Ever felt uneasy or unsure about your health journey? Patient insecurity is a real challenge many of us with chronic illness face, but awareness is key to overcoming it. After years of fighting to be heard by medical professionals — to be seen as more than a normal lab sheet, I developed patient insecurity that…
Little Engine Patient Advocacy 