About

Emily Hartstone

Three people told me I was fine before one of them ran the test. I started EmPOWERthePATIENTS so the next person has more than luck and a second phone call.

Three chances to let it go

I was running through Atlanta airport on an ordinary Tuesday when my heart started pounding out of my chest. It felt like a heart attack, and it came from nowhere.

I had an hour before my flight, so I sat down in a restaurant and talked myself out of it. If this were really a heart attack, surely it would be worse than this. I called home. My mom said get on the plane. So I got on the plane.

Back home I saw my doctor. I was planning events all over the country then, and I was due to fly out again within days, so this needed sorting. He said:

So I went back to the office and got on with it, and it got worse. A few hours later I was frightened enough to call again — I was about to get on another plane with something wrong with my heart. The person who answered told me:

I want to be clear about who I was at that point. I knew nothing about medicine. I had no framework for pushing back, no vocabulary, no reason to think a doctor could simply be wrong. Everything I know now, I learned after this.

I went to Patty anyway.

The voicemail

Patty asked a lot of questions — carefully, like she was already working toward something. She sent me for stat bloodwork and said she would call in a couple of hours to tell me whether I could fly.

I went home and started packing anyway. At 5:30 that evening there was a voicemail I had missed.

I had never heard of Graves disease. I looked it up, the way everyone does, and learned it was an overactive autoimmune thyroid disorder.

Here is the part I think about most. There were three moments where I could have let it go, and I nearly took all three. The restaurant, where I decided it probably was not serious. My doctor, who told me I was young and stressed. The phone call, where someone who had never examined me said I was sure to be fine.

Patty ordered the test that found it. But I only got to Patty because I made one more phone call after being told not to bother.

That is what this organization is for. Not because pushing back should be necessary — it should not be. But until it stops being necessary, nobody should have to work out how to do it alone, with no vocabulary and no idea that a doctor can simply be wrong.

What came after was harder

Graves was the first diagnosis, not the last. A pheochromocytoma followed — a rare tumour that was going to be monitored rather than treated, which meant learning to live around a heart rate that would spike if I did anything strenuous.

Then it stopped being manageable. I was blacking out constantly. My weight was crashing. My hair was falling out and I was cold all the time. I went in to check my thyroid levels, because I take replacement hormone and will for the rest of my life, and the levels were fine.

So I was sent from department to department. Nobody could work out what was wrong.

What followed took years. A dose that overcorrected so badly my mother had to help me sit up in bed. A thyroidectomy that worked for two days. A surgeon who named two possibilities and refused to say the second one aloud because it was one in a million. An endocrinologist who would not run the test for it, a second one who did, and a result I carried back in my own hands.

It was positive.

Read the full account →

What I learned in those rooms

That being disbelieved is its own injury, separate from the illness underneath it.

That "you are young" is a statistical observation, not an examination.

That "your labs are normal" and "there is nothing wrong with you" are not the same sentence, though they are delivered as though they were.

That women describing physical symptoms are handed psychiatric explanations at a rate that should embarrass the profession. Sometimes those explanations are correct and deserve treatment on their own terms. They still do not account for a physical finding, and too often the search stops the moment one is offered.

And that none of this gets better by waiting for it to. It is going to be up to patients to push, and that is uncomfortable, and we have to do it anyway. Doctors are human. Every human gets things wrong. Deference is not a care plan.

How this started

When I was first diagnosed I was not sure I wanted anyone to know. I searched the #thyroid hashtag on Instagram, mostly to read.

There was an entire chronic illness community already there.

I started posting my own story, and what came back was not sympathy. It was recognition — message after message from people saying they had been through the same thing and had never seen it described. That is when it stopped being about me.

What EmPOWERthePATIENTS does now

We publish plain-language reporting on research, policy, and access for rare disease and chronic illness communities. We build resources for the parts nobody prepares you for — appealing a denial, getting to a diagnosis, walking into an appointment where you have not been heard.

And we publish Warrior stories, because the recognition I found in a hashtag is still the thing that helps most.

We are not clinicians and we do not give medical advice. What we do is narrower and, I think, more useful: help you understand what is known, what is contested, and what to ask — so you walk in better prepared.

Emily Hartstone is a patient advocate, not a clinician. Nothing on this site is medical advice. Her work outside patient advocacy is at emilyhartstone.com.