Oh lord not another doctor 😭

22 Years of Being Dismissed: What Doctors Missed Until Genetic Testing

I started going to doctors for strange, overwhelming symptoms when I was 30 years old. I’m now 52—and for 22 years, I was dismissed, overlooked, and told things that were simply not true.

It began with episodes I couldn’t explain. Vertigo. Nausea. Intense stomach pain. Fatigue so extreme it felt like my body was shutting down. I remember one morning driving to work and having to pull over. I couldn’t see clearly, I felt like I was going to pass out. It was terrifying.

But every time I went to the doctor, I was brushed off.

Because I have arthrogryposis—a rare condition that affects joint movement—many doctors assumed I was simply “depressed” or “emotional.” They never took a deeper look. They saw my physical disability and made assumptions about my mental health. Over and over again, I was told that what I was feeling was in my head, that I was just stressed or sad. It was dehumanizing.

It wasn’t until years later, during a visit to my orthopedic doctor, that someone finally took my pain seriously. He ordered a simple blood test—a sedimentation rate (ESR). When the results came back, my sed rate was over 100. That number is dangerously high and a clear indicator of serious inflammation in the body.

He looked me in the eye and said, “You need to see a rheumatologist. Immediately.”

That was the turning point.

I was lucky to find a compassionate, intelligent rheumatologist. But even he couldn’t pinpoint the cause of my symptoms right away. It took years of trial and error, countless labs, and finally—genetic testing—to uncover the truth: I have familial Mediterranean fever (FMF), a rare autoinflammatory disease.

Here’s the painful truth: if doctors had considered genetic testing earlier, I could have had answers decades ago. I could have avoided unnecessary suffering, self-doubt, and years of being told I was just “sad.” FMF isn’t something you can see on the outside. It hides, it mimics other conditions, and it’s often misunderstood—especially in patients who already have a visible disability.

I’m sharing my story because I know I’m not alone.

There are so many people out there—especially women, people with rare diseases, or those with disabilities—who are being dismissed by doctors because their symptoms don’t fit into a neat, obvious box.

Doctors need to do better. They need to listen. They need to look beyond surface-level assumptions. And they need to start using genetic testing when patients are suffering without answers.

It shouldn’t take 22 years to be believed.

If you’re reading this and feel like no one is listening to you—don’t give up. Advocate for yourself. Ask questions. Push for answers. You know your body better than anyone.

And if you’re a healthcare provider: please listen more closely. Test more thoroughly. Ask better questions. You just might change a life.

Let’s break the cycle of dismissal—for good.

#FMFAwareness #RareDiseaseAwareness #GeneticTestingMatters #DisabledAndDismissed #ListenToPatients