When the Emergency Room Stops Feeling Safe

What happens when the place you’re supposed to go for help becomes the place you fear the most?

I used to carry a migraine binder everywhere.

It wasn’t because I liked being prepared.

It was because I thought that if I arrived with enough evidence—my neurologist’s treatment protocol, medication list, allergies, imaging reports, after-visit summaries, years of documentation—someone would finally believe me.

I was wrong.

What If the Biggest Barrier to Seeking Emergency Care Isn’t the Migraine but the Memory of the Last Time You Asked for Help?

For many people living with chronic migraine, deciding whether to go to the emergency room isn’t simply a medical decision. It’s an emotional one.

Before we ever walk through those sliding glass doors, we’re often weighing two very real possibilities:

Will this migraine become dangerous if I stay home?

Or…

Will seeking help leave me feeling worse than when I arrived?

That isn’t a choice anyone should have to make.

I know because I’ve made it more times than I can count.

Years ago, I created what I called my migraine binder. It wasn’t a collection of papers born from anxiety or perfectionism. It was born from experience. Inside were my neurologist’s treatment protocol, medication list, allergies, imaging reports, surgical history, after-visit summaries, and years of documentation proving that I lived with chronic, intractable migraine.

I believed that if I arrived prepared—if I had enough evidence—my care would be smoother. Safer. More compassionate.

Instead, I often found myself trying to prove something that should never require proof: that my pain was real.

Despite arriving with documentation, I was sometimes dismissed. My symptoms were minimized. Questions about my medications felt more like interrogations than attempts to understand my care. At times, I left feeling as though I was viewed not as a patient experiencing a neurological disease, but as someone seeking drugs.

Those experiences left scars that no MRI or CT scan could ever reveal.

Today, I understand that what I was experiencing has a name many patients recognize: medical trauma. After enough encounters where your pain is questioned or your character feels scrutinized, you don’t simply forget those experiences. Your body remembers. Your mind remembers. Eventually, even considering the emergency room can trigger fear, anxiety, and dread.

That trauma changed my behavior.

When my neurologist developed a home rescue protocol that included injectable Toradol, anti-nausea medication, steroids, antihistamines, hydration, and magnesium, I didn’t simply choose to stay home because it was more convenient.

I chose home because it felt safer.

That distinction matters.

Patients are often labeled as “noncompliant” or accused of delaying care without anyone asking why. Sometimes the answer isn’t denial or stubbornness. Sometimes the answer is that previous healthcare experiences have taught us that seeking help comes with emotional risk as well as physical vulnerability.

For Black patients and other historically marginalized communities, that emotional risk can be even greater.

Research has repeatedly demonstrated disparities in pain assessment, treatment, and communication across healthcare settings. Cultural assumptions, implicit bias, and systemic inequities can influence whether patients are believed, how quickly their pain is addressed, and whether their symptoms are attributed to legitimate illness or dismissed.

Culturally competent care is not simply about recognizing differences in race, ethnicity, language, or culture. It is about understanding how those experiences shape trust, communication, and healthcare outcomes.

It means recognizing that when a Black woman with chronic migraine arrives carrying years of medical records, she isn’t trying to be difficult.

She’s trying to survive another encounter with a healthcare system that hasn’t always made her feel safe.

It means replacing assumptions with curiosity.

Instead of asking, “Why is she here again?”

Ask, “What has she already tried?”

Instead of wondering whether a patient is exaggerating their pain, ask how migraine affects their daily life and what treatments have worked in the past.

Instead of viewing a treatment protocol as a challenge to your expertise, recognize it as an opportunity for partnership.

Patients with chronic illnesses often become experts in their own conditions because they have no other choice.

The most healing moments I’ve experienced in healthcare haven’t always been because my pain disappeared.

They happened when a clinician looked me in the eye, believed what I was telling them, and treated me like a person instead of a problem to solve.

Clinical expertise saves lives.

Compassion restores trust.

Both are essential.

Today, I’m helping a family member prepare an emergency migraine treatment plan after retinal surgery. My hope is that she never has to use it. But if she does, my greatest wish isn’t simply that she receives the correct medications.

I hope she is met with kindness.

I hope someone takes the time to listen before making assumptions.

I hope her lived experience is viewed as valuable clinical information rather than something to overcome.

And I hope she leaves feeling that she was cared for—not just treated.

Because the biggest barrier to seeking emergency care should never be the memory of the last time you asked for help.

Every patient deserves to enter an emergency department believing they’ll be met with dignity, compassion, and culturally competent care. When that happens, emergency medicine becomes more than a place where symptoms are treated.

It becomes a place where trust can begin to heal.

Protecting Your Peace in the Emergency Room

None of these suggestions should have to exist.

In a perfect world, every person living with migraine would walk into an emergency department knowing they would be believed, treated with dignity, and cared for with compassion.

We’re not there yet.

Until we are, I’ve learned that preparing for an emergency visit isn’t just about packing medications or insurance cards. It’s about protecting your peace.

If you’re able, bring someone you trust. A family member, friend, or caregiver can speak up when pain makes it difficult to find your words. They can remind staff of your treatment plan, advocate when you’re exhausted, and simply sit beside you so you don’t have to face it alone.

If you have a neurologist, ask them to help create a concise emergency treatment protocol. Keep it on your phone and, if possible, carry a printed copy. Include your diagnoses, allergies, medications, previous treatments that have been effective, and any medications that should be avoided. While it won’t guarantee a better experience, it can help the clinical team understand your history more quickly.

Pack a small “migraine emergency kit.” Mine would include sunglasses, earplugs or noise-canceling headphones, a charged phone and portable charger, a bottle of water if permitted, lip balm, a sleep mask, and anything else that helps reduce sensory overload while waiting. Emergency departments are designed to respond to crises—not to minimize migraine triggers—so finding small ways to create comfort can make a long wait a little more bearable.

Don’t be afraid to communicate your sensory needs. A simple statement like, “I’m experiencing a severe migraine and light and noise make my symptoms significantly worse. Is there a quieter or dimmer place I can wait if one becomes available?” invites collaboration rather than confrontation. The answer may not always be yes, but asking is appropriate.

If you’re able, tell the team what has worked for you in the past. You know your body. Sharing that information isn’t demanding specific care—it’s providing valuable clinical context.

Most importantly, remember this:

Needing emergency care is not a personal failure.

You are not “too much.”

You are not a burden.

You are not wasting anyone’s time because your illness is invisible.

You deserve relief.

You deserve to be heard.

You deserve compassionate, culturally responsive care that recognizes both your humanity and your lived experience.

Self-advocacy isn’t about having the perfect words or carrying the perfect binder.

Sometimes, self-advocacy is simply showing up when you’re at your most vulnerable and believing that your pain deserves care—even if past experiences have tried to convince you otherwise.

And for the healthcare professionals reading this:

You may never know how much courage it took for the person in front of you to come through those emergency room doors.

The way you greet them, listen to them, and believe them may influence not only the care they receive today, but whether they feel safe seeking care tomorrow.

Sometimes the most powerful treatment you can offer begins long before the medication reaches the IV.

Patients rarely remember every medication they received in the emergency department. They almost always remember how they were made to feel.

Self-advocacy isn’t about proving your worthiness of care. It’s about honoring your lived experience and ensuring your voice remains present, even on the days migraine tries to take it away.

Migraine and Neurodivergence: What It’s Like Living with AuDHD and Chronic Migraine

Exploring the overlap between migraine, sensory processing, and neurodivergence—including ADHD, autism, anxiety, and depression.

When Migraine Meets a Non-Neurotypical Brain

For most of my life, I’ve lived at the intersection of migraine and a brain that doesn’t quite fit the mold of “neurotypical.”

Migraine is often described as a neurological disease—but at its core, it’s also a disorder of sensory processing. Light, sound, smell, touch… the very things meant to help us experience the world can become overwhelming, distorted, and painful.

Now layer that onto a brain that is already wired differently.

Neurodiversity is the natural variation in how human brains function. No two brains are the same—we each have different strengths, challenges, and ways of processing the world. Within that spectrum are people who are neurodivergent: individuals whose cognitive functioning falls outside what society labels as “typical.”

And here’s what often gets overlooked: neurodivergence isn’t separate from who you are—it’s an essential part of you.

So what happens when migraine enters that picture?

Many forms of neurodivergence share a common thread: differences in sensory processing. Sensitivity to light. Sound. Touch. Pain. The nervous system doesn’t just receive input—it can amplify it, misinterpret it, or struggle to regulate it.

For someone with migraine, those same sensory triggers can already set off an attack. But for those of us who are also neurodivergent, the experience can feel intensified, prolonged, and harder to recover from.

It’s not just a headache.

It’s a full-body, full-brain experience of overload.

I live with depression, anxiety, and AuDHD (autism spectrum disorder and ADHD)—and I’ve often wondered how much these overlapping conditions shape my migraine experience. There are also pieces of my story, like suspected dyscalculia, that I’m still learning to understand.

What I do know is this: my brain doesn’t process the world in a typical way. And when migraine enters the mix, it doesn’t just disrupt my day—it disrupts an already complex system trying to make sense of sensory input.

What It Actually Feels Like

There are moments when it’s not just pain—it’s too much everything.

The light is too bright, even when it’s dim.

Sounds don’t just feel loud—they feel sharp, intrusive, impossible to ignore.

My clothes feel wrong against my skin.

My thoughts scatter in ten directions at once, while my body is begging for stillness.

And then the migraine hits.

Or maybe it was already there, quietly building.

It becomes hard to tell where the sensory overload ends and the migraine begins.

People see me cancel plans.

They see me retreat to a dark room.

They see me go quiet.

What they don’t see is the internal negotiation—trying to regulate my environment, emotions, body, and pain all at once.

Trying to function in a world that wasn’t designed for the way my brain processes it.

If This Is You, You’re Not “Too Sensitive”

If you live with migraine and you’re neurodivergent—or suspect you might be—you may have questioned yourself.

Why does everything feel so intense?

Why does it take me longer to recover?

Why can’t I just push through?

You are not too sensitive.

Your brain is not broken.

And your experience is not an exaggeration.

When sensory processing differences and migraine coexist, they don’t just add up—they interact. They amplify. They complicate each other.

And just because it isn’t fully understood doesn’t mean it isn’t real.

The Gap We Don’t Talk About Enough

Migraine commonly overlaps with depression, anxiety, ADHD, PTSD, OCD, and more. But our care is often fragmented.

A neurologist or headache specialist for migraine.

A therapist for mental health.

A separate evaluation—if we can access it—for neurodivergence.

But very few conversations center what it’s like to live with all of these at once.

Very few treatment plans account for sensory overload as both a trigger and a baseline state.

Very few providers ask:

How does your brain experience the world—and how might that shape your migraine?

When care isn’t connected, patients are left to do the connecting themselves.

And that’s a heavy burden to carry.

Where I’m Landing (For Now)

I’m still learning my brain.

Still unmasking.

Still figuring out what support actually looks like for me.

But I know this:

Migraine doesn’t exist in isolation.

Neither does neurodivergence.

And if we want better care and understanding, we have to start talking about where they intersect—not just clinically, but personally.

Because for those of us living it, this isn’t theoretical.

It’s daily life.

If this resonates with you, you’re not alone—and you don’t have to navigate this intersection in silence.

I’d love to hear your experience.

Do you live with migraine and identify as neurodivergent?

Have you noticed how sensory overload impacts your attacks or recovery?

Share in the comments or send me a message. Your story matters—and the more we talk about this, the more we push for care that actually sees the whole person.

And if this is something you’re still figuring out, that’s okay too. There’s space for you here.

The Emotional Cost of Advocacy

Advocacy often begins from a deeply personal place.

For many of us, it grows out of our pain, our search for answers, and our desire to make things better for the people who come after us. I didn’t start advocating because I set out to—it was an organic process that unfolded as I began to feel more empowered as a patient. Blogging was a natural entry point for me, allowing me to describe life with migraine, explore the challenges of mental health, and create a safe space for others on a similar journey.

In an effort to feel less isolated, blogging became a pathway to community. It connected me with others living with migraine and chronic illness and reminded me that I wasn’t alone. And naturally, I felt a responsibility to offer that same sense of connection to anyone who found their way to my words. Through my lived experience, I grew into my role as an advocate and became a voice for others.

This is where advocacy began to expand for me.

The public side of advocacy

There’s a side of advocacy that is powerful, visible, and deeply meaningful—the part people often see, and the part that keeps me coming back. At its core, advocacy is powerful work, not just in theory, but in the everyday moments where real connection happens.

I’ve had the privilege of speaking on stages, sharing my story in rooms I once never imagined I’d be in. I’ve written posts that reached people in their most vulnerable moments. I’ve had conversations—through interviews, panels, and quiet messages—that reminded someone they weren’t alone in their pain.

There is nothing small about helping someone feel seen. Especially in a condition like migraine, where so many of us have been dismissed, misunderstood, or overlooked.

As a Black woman in this space, that visibility carries even more weight. For so long, many of us haven’t seen ourselves reflected in these conversations at all. This is why I continue to show up. Advocacy can shift narratives, open doors, and remind people that their experiences are valid—even when the system hasn’t caught up yet.

But what’s often left out of this picture… is what it takes to keep showing up this way.

What people don’t always see is what exists beneath the visibility. Advocacy has allowed me to turn my pain into purpose—bringing me into rooms I never expected to be in. And in those moments, I’ve seen firsthand how powerful sharing lived experiences can be.

The invisible emotional labor

But what’s often overlooked is the effort it takes to consistently show up this way.

What’s missing from the conversation around advocacy is the emotional labor behind it. For every moment of visibility, there are parts of this work that remain unseen.

The burnout from being tokenized sits heavy on me. At times, I’ve come to understand that my inclusion wasn’t based on the depth of my experience, but on what my presence symbolized—a seat at the table, but not always a voice that was fully heard.

In some spaces, diversity feels like something to be displayed rather than deeply engaged with—where being seen becomes more important than being understood. While efforts have been made to be more inclusive and representative, it can still feel surface-level. Representation without depth is not inclusion—it’s performance.

And then there’s the exhaustion that doesn’t always have a name.

The kind that comes from constantly translating your experience so others can understand it. From showing up with vulnerability, over and over again, in spaces that don’t always hold it with care. From educating while still suffering, carrying the weight of speaking for others, and navigating spaces that weren’t built with you in mind.

Feeling unseen

And just as heavy—though less often talked about—is what it feels like to watch others improve while I remain intractable.

It’s hard to be part of conversations about progress, new treatments, and hope, while living in a body that hasn’t responded the same way. There’s a quiet grief in that—one that exists alongside the work, even as I continue to advocate for change.

Despite the work I contribute toward moving things forward, there are still moments when I feel unseen. Especially as someone living with complex migraine—an experience that doesn’t always fit neatly into the narratives most often centered.

There are times when voices like mine are included to support a narrative of diversity, equity, and inclusion—but not always to challenge, reshape, or deepen it. And surface-level inclusion, no matter how well-intentioned, still leaves gaps.

This is the emotional cost of advocacy.

The tension of being visible but not fully seen.

Of being included but not always considered.

Of sharing so much of your story while still carrying your own unmet needs.

And over time, I’ve had to ask myself what it means to continue this work without losing myself in it.

Advocates also need care

One of the most overlooked parts of advocacy—especially in chronic illness—is that we are often doing this work while still actively unwell.

I’ve advocated during flare days. Written posts through brain fog. Shown up to speak while managing pain that no one in the room could see. I’m not sharing a story from the other side of this—I’m sharing it while I’m still living it.

There’s a constant balancing act between helping others and protecting my own health. Between showing up and knowing when I need to step back. Between being a resource and being a person who still needs care.

And that balance isn’t always visible to the people benefiting from the work.

Sometimes, the very thing that gives my pain purpose is also the thing that drains me the most.

Over time, I’ve learned that rest is not a luxury in this work—it’s necessary. Especially when your body is already asking so much of you.

I’ve had to come to terms with the fact that I cannot hold everyone’s pain, no matter how deeply I care. Caring doesn’t have to mean carrying everything.

Stepping back is not failure—it’s listening. To my body. To my limits. To what I need in order to keep going.

Because sustainability matters in advocacy. Not just the impact we make—but whether we can continue to exist, to show up, and to live alongside the work.

Advocacy can be emotionally expensive, but it is also deeply meaningful. When we share our stories and support one another, we create community—and that community can be powerful.

Advocacy has given my pain purpose—but it has also taught me the importance of protecting my peace.

And both of those things can exist at the same time.

The work matters.

And so do I.

It's Migraine & Headache Awareness Month!

It's Migraine and Headache Awareness Month!

Why MHAM Matters

June is Migraine and Headache Awareness Month! As a participant of the Coalition for Headache & Migraine Patients, we believe better days and more treatment options are available for people living with headache disease.

There are more than 150 different types of headache diseases, with varying symptoms and treatments. Patients should not have to accept any level of pain as status quo. There are options.

Your Path To Better Days

Too many of us have lived with this debilitating disease for years. Please know that you are not alone. There is already a strong community of advocates fighting hard to get recognition and empathy for headache diseases, and we have come a long way with new treatments and support systems. Where to start:

1. Schedule a dedicated appointment with a healthcare provider

2. Track and share your symptoms with your provider

3. Get a correct diagnosis

4. Get treatments that meet your personal goals

5. Request a specialist referral if needed

Raise Awareness for Headache Diseases

Visit the MHAM website to learn more about the organizations and people who are advocating for patients. How you can support advocacy efforts:

1. Share on social media >>

2. Secure an MHAM proclamation >>

3. Attend an MHAM event >>

Let’s create better days together,

The Migraine Diva

My New Book More Than Migraine is Now 50% Off!

After years of living with chronic migraine, I’m thrilled to share my journey and insights with you in my new book, More Than Migraine: A Journey Through Pain, Advocacy, and Hope. This book is a deeply personal guide for anyone navigating the challenges of chronic migraine, offering practical strategies, inspiration, and a roadmap to living fully despite the pain.

In More Than Migraine, I explore:

• Effective strategies for managing migraines and improving your quality of life

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• The future of migraine treatment and advocacy

• And much more!

Whether you’re living with chronic migraine or supporting someone who is, I hope this book offers you hope, strength, and the knowledge that you are not alone. 🙌

On June 13, 2025, we will be launching our MHAM Promotion, where you can purchase the book in either print or digital copy (Kindle) for 50% off!

📖 Purchase the print or digital copy of the book for only $9.99 between June 13-20, 2025 (between 12:00 AM and 11:59 PM).

🛒 Click here to get your copy

📢 Spread the word! Share this email with your friends, family, and community who may benefit from this book.

I am so grateful for your support and can't wait to celebrate this milestone together. Let’s make "More Than Migraine" a #1 Amazon Best Seller and help amplify the voices of those living with migraine!