02/25/2025
Even though I’d experienced widespread pain in various parts of my body from as young as eight years old, it wasn’t until I was at the Mayo Clinic for a spinal CSF leak at the age of 32 that I was diagnosed with Ehlers-Danlos Syndrome (EDS). This delay occurred despite my attending dozens—if not hundreds—of medical appointments over the years for a myriad of unexplained symptoms, nearly all of which can now be traced back to the fact that I have a connective tissue disorder.
So, what did I do wrong?
Unless simply existing as a woman counts as a mistake, then absolutely nothing.
The unfortunate reality is that women and BIPOC are disproportionately subjected to medical neglect and discrimination. Research confirms what many of us already know from personal experience: we are more likely to be dismissed, misdiagnosed, or told our symptoms are “just anxiety.” Instead of receiving necessary medical care, we are often gaslit, turned away, or left to suffer without answers.
This is not a new problem. It has been happening for centuries, and systemic change is slow. But while we may not be able to fix the entire system overnight, there are things we can do to minimize harm and advocate for ourselves in medical settings:
1️⃣ Document Everything – Keep detailed records of your symptoms, test results, and previous medical visits. Having a paper trail makes it harder for providers to dismiss your concerns. GuavaHealth.com is a great free app for integrating medical records and tracking symptoms.
2️⃣ Bring an Advocate – A trusted friend, family member, or patient advocate can help reinforce your concerns and push for answers when you’re being ignored. Research actually supports this making a difference in the care patients receive.
3️⃣ Ask About Differential Diagnosis – A provider should have an idea of alternative diagnoses that might explain your symptoms beyond anxiety or whatever else they suggest it is. Ask them to explain their differential diagnosis and how they ruled out the other potential causes for your symptoms.
4️⃣ Don’t Be Afraid to Seek a Second (or Third) Opinion – If a provider dismisses you, keep looking.
Dr. Caroline Antler, PhD, MS, HSP