No One Tells You About Not Feeling ‘Disabled Enough’ When You Live With a Chronic Illness
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No One Tells You About Not Feeling ‘Disabled Enough’ When You Live With a Chronic Illness

When I Don’t Feel ‘Disabled Enough’ as Someone With a Chronic Illness There’s a quiet struggle that many people with chronic illness carry—a tension that rarely makes its way into conversations, even within disability communities. It’s the feeling of not being “disabled enough.” You live with pain, fatigue, or a body that doesn’t work like it used to, but you look in the mirror and wonder if you qualify. You walk through life managing symptoms…

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Why Spoonies Need to Forgive Themselves for Not Sticking to a Routine and Embrace Flexibility Instead
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Why Spoonies Need to Forgive Themselves for Not Sticking to a Routine and Embrace Flexibility Instead

Dear Spoonies, It’s Time to Forgive Yourself If You Can’t Keep a Routine For many, routines are the backbone of success. Wake up early, exercise, plan your meals, check your goals. The world praises discipline, consistency, and structure. But for spoonies—those living with chronic illnesses—the pressure to maintain a perfect routine can feel not only overwhelming but impossible. When your energy is limited, your symptoms unpredictable, and your body often working against you, sticking to…

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What the Scariest Part of Chronic Illness Feels Like to Me Will Change How You Understand It
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What the Scariest Part of Chronic Illness Feels Like to Me Will Change How You Understand It

What the Scariest Part of Chronic Illness Feels Like to Me When people think about chronic illness, they often picture pain, fatigue, or endless appointments. And yes, those are hard. But what they don’t see—the part that stays quiet and hidden—is what truly terrifies me. Because the scariest part of chronic illness doesn’t always show up on a medical chart or in a flare-up. It’s the slow erosion of certainty, the unpredictability of the next…

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Alone With Pain: The Harsh Reality of Living Alone With Fibromyalgia
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Alone With Pain: The Harsh Reality of Living Alone With Fibromyalgia

The Harsh Reality of Living Alone With Fibromyalgia Living with fibromyalgia is hard enough—but facing it alone brings a whole new level of difficulty. The constant pain, fatigue, and unpredictability of the condition are made even more daunting when there’s no one else in the home to offer support, comfort, or simply presence. For many, living alone with fibromyalgia means navigating a world that’s not only physically demanding but emotionally isolating. This experience is not…

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Dear Doctor: The 10 Things You Should Never Say to a Fibromyalgia Patient
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Dear Doctor: The 10 Things You Should Never Say to a Fibromyalgia Patient

Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients Dear doctor, we understand your job isn’t easy. We know you face long hours, mounting pressure, and endless patient charts. But we also know what it feels like to walk into your exam room carrying pain that never fully goes away. To describe symptoms we barely understand ourselves, only to leave feeling unheard, unseen, or worse—blamed. For those of us living with fibromyalgia,…

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Knowing When to Walk Away: The Hard Truth About Breaking Up With Your Doctor
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Knowing When to Walk Away: The Hard Truth About Breaking Up With Your Doctor

When It’s Time to ‘Break Up’ With Your Doctor In theory, your doctor should be your partner in health—someone who listens, respects, and supports your journey toward wellness. But in reality, not all doctor-patient relationships work out the way they should. Sometimes, despite years of visits and trust, the relationship no longer serves your needs. And just like any other relationship, there may come a time when you have to walk away. Breaking up with…

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The Double Burden: What It’s Like to Be an Empath With Fibromyalgia
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The Double Burden: What It’s Like to Be an Empath With Fibromyalgia

What It’s Like to Be an Empath With Fibromyalgia To be an empath is to feel the emotions of others as if they are your own. To live with fibromyalgia is to endure chronic, often invisible pain that touches every part of life. When these two identities coexist within one person, the experience becomes more than just difficult—it becomes a delicate balancing act of emotional and physical survival. Being an empath with fibromyalgia is living…

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The Pain Doesn’t Fade: Why I Haven’t ‘Gotten Used to’ My Fibromyalgia After All These Years
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The Pain Doesn’t Fade: Why I Haven’t ‘Gotten Used to’ My Fibromyalgia After All These Years

Why I Haven’t ‘Gotten Used to’ My Fibromyalgia When people hear that I’ve been living with fibromyalgia for years, their reaction is often rooted in misunderstanding. They assume that with time, I must have adjusted to the pain, adapted to the fatigue, and learned to carry on like nothing happened. They ask, “Haven’t you gotten used to it by now?” with the kind of casual expectation reserved for everyday inconveniences. But fibromyalgia is not something…

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The Unspoken Weight of Wearing My Disability Blue Badge on the Train
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The Unspoken Weight of Wearing My Disability Blue Badge on the Train

How It Feels to Wear My Disability Blue Badge on the Train When I board a train wearing my disability blue badge, I’m not just carrying a plastic card or lanyard. I’m carrying the invisible weight of judgment, assumptions, and sometimes even shame. That small symbol, intended to offer support and recognition, can feel more like a spotlight than a shield. And yet, I wear it—because I have to. Disability, especially when it’s invisible, invites…

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The Overlooked Warning Sign: When Brain Fog Strikes Before Your Fibro Diagnosis
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The Overlooked Warning Sign: When Brain Fog Strikes Before Your Fibro Diagnosis

When the Brain Fog Comes Before Your Fibro Diagnosis Before the widespread pain, before the chronic fatigue, and before any doctor uttered the word fibromyalgia, there was brain fog. Not a little forgetfulness, not occasional distraction, but an all-consuming mental haze that made everyday thinking feel like pushing through wet concrete. For many, this brain fog begins long before a formal diagnosis, making it one of the most unsettling and often overlooked symptoms in the…

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