I Spent Six Years Being Told It Was All in My Head. It Almost Killed Me.

Before Everything Changed

I grew up swimming at a pretty high level. Before college I trained under Bruce Gemmell, who later became Katie Ledecky’s coach, and at University of Delaware I held the school record in the 200 butterfly for several years. I ran half marathons for fun and my best time was 1:39.

I knew my body really, really well.

And then one day I just didn’t recognize it anymore.

It wasn’t one dramatic moment where everything suddenly fell apart. It was more like a slow leak I kept trying to explain away. Around 2015, I tried to jog a mile with my mom at basically a shuffle pace and my heart rate hit 200.

That was the beginning of six years of having absolutely no idea what was wrong with me.

At first I thought maybe I had overtrained. I took a break. The break didn’t help. I still couldn’t run. Workout classes became impossible. I was exhausted all the time and the symptoms just kept stacking on top of each other until I couldn’t ignore them anymore.

So I started seeing cardiologists.

My dad has tachycardia, so it felt like a reasonable place to start. One after another, they ran tests, looked at the results, looked at me — a woman in her twenties who appeared healthy on paper — and told me some version of the same thing.

Stress. Anxiety. Deconditioning. I needed to work out more. I was a former Division I swimmer being told I needed more cardio.

I knew my body. I knew this wasn’t normal for me. And I also knew nobody was actually listening.

The Years Nobody Had Answers

The years between 2016 and 2022 are honestly hard to explain unless you’ve lived through something similar.

It’s this weird exhausting limbo where you know something is deeply wrong, but every appointment slowly chips away at your trust in yourself. Some doctors were dismissive. Some were condescending. A couple genuinely seemed irritated that I kept showing up without a simple explanation.

I was a young woman with symptoms that didn’t fit neatly into their testing, and for a lot of them, that was apparently enough to stop digging. But what else was I supposed to do? So I kept pushing.

Eventually I found a cardiologist who actually listened long enough to witness some of it happening himself. He identified extra nodal activity and recommended an ablation. I had the procedure done in 2022.

Afterward, he told me he thought he had fixed part of the issue, but he also admitted something else was clearly going on that he couldn’t explain.

By then I was barely functioning. I was sleeping twelve hours a day. Canceling plans constantly because I had nothing left in me. My heart rate would spike above 150 while I was literally sitting on the couch. My legs would randomly go numb and tingly. I was blacking out at stop signs. And somewhere in the middle of all of that, after years of being told it was anxiety or stress or that I just needed to calm down, I started wondering if they were right.

Maybe I was making it up. Maybe it actually was all in my head.

That thought almost killed me.

January 2023

I started throwing up on January 7th, 2023, and I could not stop.

I have a dog named Dublin and I got so sick I couldn’t even take care of him. My parents live in Delaware, less than two hours away, so I called them.

I threw up probably fifty times in a matter of hours. My dad drove down and we decided I needed fluids, so we went to the hospital.

I got sick all over the ER waiting room in the middle of what felt like the worst headache of my life. When they finally brought me back and gave me a migraine cocktail, I went into anaphylaxis.

At that point there’s this girl in the ER who looks pretty normal from the outside. Young. Healthy enough. Nothing obvious. And she is actively dying. Nobody could figure out why.

The ER doctor pulled my dad aside and told him he needed to get my mom there immediately. My dad said she could make it in under two hours, she just needed to settle the dogs first.

The doctor looked at him and said, “Your daughter might not be alive in two hours.”

I talked to my mom on the phone. I kind of said goodbye.

Then I stood up and passed out. My blood pressure was somewhere around 70/30. They moved me to the ICU and started throwing everything at me, but nothing was working. I couldn’t come off the pressors. My blood pressure wouldn’t stabilize.

From my ICU bed I could see families crying in hallways. I watched staff clean out rooms after patients died.

Nobody really tells you how surreal that is when you’re twenty-something and suddenly realizing you might not leave the hospital.

The Nurse Practitioner Who Saved My Life

Two days into the ICU stay, a nurse practitioner walked into my room and saw something everyone else had missed.

She noticed dark patches on my face, which can be a hallmark sign of an Addisonian crisis, though I had never heard that term before. At that point nothing was helping. Antibiotics weren’t helping. My blood pressure still wasn’t stabilizing.

So she ordered a cortisol test.

When the results came back, one of the nurses looked at my numbers and casually told me she thought it was probably good news because my baseline cortisol was zero.

It was not good news.

A cortisol level of zero means your adrenal glands have stopped functioning. Your body can’t regulate blood pressure, stress response, blood sugar, or all the other things cortisol quietly handles every second of every day.

It meant I had been walking around for years with adrenal glands that were failing.

Every time my heart rate spiked, it wasn’t actually a heart problem. My body was desperately trying to compensate for my blood pressure crashing over and over again. My heart was basically trying to keep me alive.

The nurse practitioner came into my room and explained what I had. Addison’s disease. A rare autoimmune disease where your body attacks and destroys your adrenal glands. And I just started crying.

She immediately went into reassurance mode, telling me it was manageable and people live full lives with Addison’s. I had to stop her because I wasn’t crying because the diagnosis was bad.

I was crying because for six years I had started to genuinely believe maybe I had imagined all of it.

She understood instantly. We had this moment I don’t think I’ll ever forget. She knew what it meant that it had taken this long for someone to finally connect the dots.

At one point she told me, “Every time your heart spiked, it was trying to keep your blood pressure high enough for you to survive. Honestly, you shouldn’t still be alive if this has been happening as long as it sounds like.”

Learning How to Live Again

I was officially diagnosed on January 9th, 2023.

I stayed in the ICU another week while my body stabilized. During an adrenal crisis, they pump you full of massive doses of steroids. I was getting around 400mg a day in the hospital. My normal maintenance dose now is closer to 20mg.

Going home was terrifying. I had to taper down slowly, monitor my vitals constantly, and try not to panic every time something felt off. My parents stayed with me for almost a month because I was genuinely scared all the time.

In the months after the diagnosis, I learned even more. I have APS Type 2, which means the Addison’s didn’t come alone. I also have Celiac disease, Hashimoto’s thyroiditis, and genetic markers for Type 1 diabetes that I’ll likely develop eventually.

My immune system is apparently extremely committed to attacking me.

Living with Addison’s means becoming your own medical expert whether you want to or not. It’s a self-dosing disease. You have to learn when to stress-dose, when something is serious enough for the ER, what “off” feels like for your specific body.

There’s no autopilot version of this.

But now I have an answer.

A name for what was happening to me.

And proof that I was never making any of it up.

Not even a little bit.

If you've been dismissed, told it's anxiety, told you're stressed, told you're just a young woman who needs to relax, please keep pushing. You know your body. I knew mine, even when I started to doubt myself. Keep going.

Up next: what daily life with Addison's actually looks like, the travel stuff, the sick day rules, all the things nobody tells you when you leave the hospital.