The First Time I Got Sick

I was 28 years old when I first got sick.

I had never really been sick before.
Doctor visits were occasional—annual physicals if I remembered, the kind of appointments most people in their 20s don’t think much about.

The only time I had ever been in the hospital was to give birth.

And then, suddenly, something changed.

It started as abdominal pain.
On and off throughout the day at first—uncomfortable, but manageable.

I made an appointment with a primary care doctor.
They referred me to a gastroenterologist.

It took a few weeks to get in.

During that time, the pain got worse.
I started feeling more tired than usual.
Something wasn’t right, but I didn’t know what to do other than wait for the appointment I had been given.

When I finally saw the GI, they were running behind.

Over an hour passed after my scheduled appointment time before I was taken back.
Then another 30 minutes alone in the exam room.

When the doctor came in, the visit was brief.

An exam.
A recommendation for a colonoscopy.
A few vitamins to take.

He was in the room for maybe five to ten minutes.

I understand now what that likely meant—he was already behind, trying to catch up.

But at the time, I didn’t understand anything.

Not what we were looking for.
Not how serious this might be.
Not what I should do if things got worse.

At checkout, I learned the first available colonoscopy appointment was in September.

It was June.

No one said this was too long to wait.
No one told me to call if my symptoms worsened.
No one suggested asking about a cancellation list or another provider in the practice.

There were no instructions for how to navigate what came next.

So I did what I thought I was supposed to do.

I waited.

And I got worse.

The pain intensified.
The fatigue deepened.
Eating became harder and harder.

By the month before my colonoscopy, I was living mostly on liquids.

I was young.
I was scared.
And I had no idea how to be a patient.

Looking back now, I can see how many moments could have gone differently.

If someone had taken just a few extra minutes to explain what we were looking for.

If I had known I could ask to be put on a waitlist.
Or ask if another provider had earlier availability.

If I had known to call and say:

My quality of life is declining.
I’m not eating.
I’m missing work.
I need help sooner.

But none of that was obvious to me at the time.

Because no one teaches you how to do this.

I was eventually diagnosed with Crohn’s disease that December—by a different GI at a different practice.

Six months after my symptoms started.

Six months of uncertainty.
Six months of getting progressively sicker.
Six months of trying to do everything “right” without knowing what right actually was.

And the part that still stays with me is this:

I was one of the lucky ones.

I lived in a major city.
I had access to specialists.
I had good health insurance.

And I still spent six months trying to find my way to a diagnosis.

For many patients, it takes years.

Depending on the condition and the study, the average time to diagnosis for chronic illness is often cited between four and seven years.

Years of symptoms.
Years of uncertainty.
Years of navigating a system that assumes you already know how to move through it.

This is the part of healthcare we don’t talk about enough.

Not the medicine.
Not the technology.

But the navigation.

The unspoken expectation that patients will know:

– what questions to ask
– when to push
– how to escalate
– how to interpret what isn’t said

Even when they are overwhelmed, in pain, and doing this for the first time.

Imagine how different that six-month period could have been with just a little more guidance.

Not different care.
Different communication.

That’s the gap.

And it’s where so many patients quietly struggle.

This is what I build now—
not because the system is broken,
but because no one teaches you how to be a patient.