“It’s Not Just in Your Head”: Recognizing Medical Gaslighting & Honoring EDS Awareness Month

⚠️ Trigger Warning: This post discusses medical gaslighting, chronic illness, and harmful comments from healthcare professionals. Please read with care if these topics are sensitive or potentially distressing for you. 💜

You’re too young to be in this much pain.

It’s just growing pains.

You just need to lose weight.

You’re probably just anxious.

Have you tried yoga?

Have you tried essential oils?

Have you tried going gluten free/eating Keto?

My aunt’s cousin tried… XYZ or… *insert MLM here*

If you’ve heard any of these phrases- or anything even remotely like them- there’s a chance you’ve experienced medical gaslighting.

As someone who’s been living with chronic illness since childhood, I know how confusing, frustrating, and painful it can be to hear these words from medical professionals, the people who say words like “you can trust me” and “we’re here to help you.” There’s a unique kind of grief that comes from knowing something is wrong with your body… and being told, over and over again, that it’s all in your head.

I was ten years old the first time a doctor told me I was “too young to be in this much pain.” That it was “just growing pains,” that I needed to stretch more, that I was “probably exaggerating.” I knew what I felt. I knew something wasn’t right. But I was a kid, and they were the adults in white coats.

Fast forward to today: I’m thirty years old, and I now know that what I was experiencing all those years ago wasn’t imaginary. I was living with undiagnosed hypermobile Ehlers-Danlos Syndrome- a genetic connective tissue disorder that causes joint instability, chronic pain, fatigue, gastrointestinal dysfunction, and more. So much more. It’s often invisible. It’s often misdiagnosed. And like many EDS zebras out there, I was made to feel like a hypochondriac before I was ever validated or believed.

In honor of EDS Awareness Month, I want to use this post not just to share some of my truth- but to help others recognize when they may be experiencing medical gaslighting and feel less alone.

🩺 What is Medical Gaslighting?

Medical gaslighting happens when a healthcare provider or professional dismisses or minimizes a patient’s symptoms, fails to take them seriously, or attributes their concerns to unrelated issues (like mental health, weight, or age). Over time, it can make patients question their own judgment and delay getting the care they desperately need.

It can sound like:

Or, my personal favorite- “Your labs look fine, maybe we can retest again in 6 months to a year.”

I’ve personally heard every one of those phrases- and more. When I was first showing signs of POTS (Postural Orthostatic Tachycardia Syndrome), I was told I was “just out of shape” or “lazy,” even though I had played soccer and baseball, and had been an active kid, until my health decided I couldn’t be anymore. When I started fainting and my heart rate spiked from simply standing or changing positions, doctors shrugged it off. But I knew what I was feeling wasn’t normal. Eventually, with persistence and the right specialists, I was correctly diagnosed.

(It just took a really, really, really long time. And even now, certain doctors still question those diagnoses.)

🧬 A Web of Comorbidities: More Than One Diagnosis

One of the most complicated parts of living with EDS is that it rarely ever travels alone. You could even say that it’s got separation anxiety, so it likes to bring it’s friends for “moral support” if we’re looking at this from a place of humor, which I often do as a coping mechanism.

I live with a whole network of chronic conditions, many of which are common comorbidities of EDS, including:

POTS (Postural Orthostatic Tachycardia Syndrome)

MCAS (Mast Cell Activation Syndrome)-  which causes allergic-like reactions to things like temperature changes, stress, or even food.

Fibromyalgia

Polycystic Kidney Disease (PKD)

And even Chronic Regional Pain Syndrome (CRPS)- I bet you didn’t know that people with EDS are more likely do develop CRPS. I know that I wasn’t aware of this until recently myself.

Each condition comes with its own set of symptoms, and together they form a complex puzzle that isn’t easy to fit into a single appointment- or a single textbook. But these are real, valid, and diagnosable conditions that too often get brushed aside in favor of “you just need to calm down” or “let’s wait and see.” Or sometimes, you run across doctors who look at you based on one set of symptoms- such as a cardiologist who only wants to look at the “heart symptoms” and the “blood pressure” without taking everything else into account, when EDS can’t just be put aside into one box.

It is, in fact, a full body disease.

So, we need to start looking at patients as people, whole people, not just one set of symptoms.

🧠 Why This Matters

Medical gaslighting is more than an inconvenience- it’s a serious barrier to care. When providers don’t listen, patients stop speaking up. When patients feel ignored, they stop seeking help. It delays diagnosis. It worsens outcomes. And in many cases, it causes lifelong trauma.

I’m sharing my story not to scare you, but to empower you. If you’ve ever been made to feel like your pain isn’t real, like your symptoms are “just anxiety,” like you’re making it up- you’re not alone.

You’re not dramatic. You’re not “too sensitive.” You’re not imagining things.

You’re just waiting to be believed.

🦓 What You Can Do

Keep a symptom journal- track patterns, episodes, and how symptoms impact your daily life. This can be a paper journal, on your phone, however you feel like you’re going to both remember to write things down, and keep your thoughts organized.

Bring an advocate- a trusted friend or loved one can support you during appointments. When I was first starting my medical journey as a confused 10-year-old, entering the MCAS world, I was diagnosed with something called chronic idiopathic angioedema- my mom was the one fighting and advocating for me every step of the way. She was the one who got me into the Xolair drug trial at the Children’s Hospital of Milwaukee in Froedtert, WI, and it saved my life. After my mother passed away, my grandmother went along with me as much and as often as she could, and that torch has since passed along to Babe and Luna to be my advocate and support system.

If they try to tell you no, speak up. They cannot tell you that you cannot have someone there in the room with you to advocate for you for your mental, physical, and emotional health and wellbeing. It is your right.

Ask questions– you have the right to understand your care.

They cannot tell you that they do not have the time to explain your care to you- and if they’re trying to give you meds that you’re not comfortable with, tests, or anything of the sort, you can say no. You can reason with them, and ask if they have another course of action that you can try first. In some cases you should- depending on the situation, if surgery can be avoided, and it’s something you absolutely do not want, advocate for yourself to try something else but, remember that most doctors are trying to help you.

Seek second opinions- don’t be afraid to switch providers if you’re not being heard or seen. Or if you just feel unsafe, and uncared for by the provider as a whole- if they are not willing to talk to you about your care, or they are not giving you the standard of care that you feel you deserve, you have every right to seek out providers who will care for you properly.

I, myself, have had to fire, and leave doctors’ offices because the care provider would not listen to my concerns. One off of the top of my head being my last pain management doctors, he was insistent on doing a permanent pain pump procedure when this last DRG implant stopped working, and would not give me another course of action, and that was not something I was comfortable with due to many factors surrounding my health, so I left. You do not have to do what they want if it is something that goes against your morals, or it is something you absolutely do not want to do. (Especially if it is something that will hurt you further down the road.)

Know your rights- especially as a disabled patient.

I’ll say it again. KNOW. YOUR. RIGHTS.

💬 Final Thoughts from a Fellow Zebra

Living with EDS, MCAS, POTS, fibromyalgia, PKD, and more hasn’t been easy- but it’s been made exponentially harder by the times I wasn’t believed. That’s why I speak out. Not to be dramatic. Not to be difficult. Not to seek attention or because I want all eyes on me. But to remind others- especially young, disabled, chronically ill, and neurodivergent folks like me, that your voice matters.

And if you’re a medical professional reading this: please listen. Please look beyond the surface. Please believe your patients. You might be the first person who ever does.

With strength, softness, and spooky cryptid energy,

-Sky️, The Crippled Cryptid

Writer, Zebra, Spoonie, Service Dog Mama

🧭 Resources & Support

Whether you’re newly diagnosed, searching for answers, or supporting a loved one, these resources can help you feel a little less alone.

🦓 Ehlers-Danlos Syndrome & Hypermobility

The Ehlers-Danlos Society– Global nonprofit offering education, research, and community support.

EDS Wellness– Focused on integrative healthcare and whole-body wellness for EDS & HSD.

Hypermobility Syndromes Association (UK-based)

💓 POTS & Dysautonomia

Dysautonomia International– Awareness, research, and patient resources for POTS and related conditions.

🌸 Mast Cell Activation Syndrome (MCAS)

The Mast Cell Disease Society– Comprehensive information on MCAS, including diagnostic criteria and treatment guidelines.

☁️ Fibromyalgia

National Fibromyalgia Association

U.S. Pain Foundation- Advocacy, support, and resources for people with chronic pain.

🧠 Medical Gaslighting & Advocacy

Patients Rising- Advocating for people with chronic and rare diseases.

Disabled and Here- Celebrating disabled lives with art, stories, and visibility.

Chronically Capable- Tools and job access for chronically ill and disabled individuals.