Tag: patient advocacy
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Welcome to Sjogren’s Awareness Month: Let’s Raise Our Voices (and Glasses of Water)
Hello, Sjogees! It’s April, which means it’s time for Sjogren’s Awareness Month. It’s a time where we get to share our stories, raise awareness, and have a little fun while doing it. Whether you’ve just been diagnosed, have been living with Sjogren’s for years, or are supporting someone on this journey, this month is all…
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Trusting Your Gut and Taking Control: A Story of Advocacy in the Face of Breast Implant Illness
The world needs to know that women’s health issues often get swept under the rug, and it’s high time we start listening, talking, and advocating for ourselves. This is why I’m so thankful to come across this personal story on social media. With the patient’s permission, I’m sharing her story (and I hope you do,…
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IT’S FINALLY HERE! HOW TO BE A BADASS IN A BROKEN HEALTHCARE SYSTEM IS OFFICIALLY ON SALE!
I should probably write something polished and professional to mark this moment, but after pouring my heart, soul, and a few too many spoons into this book, all I really want to do is run (or gracefully waddle) through the streets yelling, “IT’S HERE, IT’S HERE, IT’S FINALLY HERE!” So, consider this my virtual confetti…
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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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The Seronegative Struggle: Why It’s Harder to Get a Diagnosis (and What You Can Do About It)
If you’ve ever suspected an autoimmune disease but had normal labs, you’re not alone. Welcome to the seronegative struggle—a frustrating journey marked by delayed diagnoses, dismissed symptoms, and endless appointments. Seronegative means that your blood tests don’t show the antibodies commonly associated with a condition, despite clear symptoms. It’s a maddening limbo that leaves many…
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The One Thing Missing From Your Sjögren’s Care Plan (And It’s Not Another Supplement)
When it comes to managing Sjögren’s—or even suspecting you have it—you’ve likely heard the usual advice: tweak your diet, adjust your lifestyle, add supplements, and follow your medication plan. And yes, those things are important, but they’re not the whole picture. As someone who’s lived this life and spends her days immersed in Sjögren’s support…
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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…
Little Engine Patient Advocacy 