Living With Eosinophilic Oesophagitis (EOE): The Invisible Inflammation

a day ago

4 min read

Personal experience, plain‑English science, and why awareness matters

My Diagnosis Story

I was officially diagnosed with Eosinophilic Oesophagitis (EOE) toward the end of 2022, but the signs had been there for years before that.

For roughly two years, I finished almost every single day with what doctors call a low-grade fever. A normal body temperature can fluctuate a little throughout the day, but when it regularly climbs more than about a degree, that’s a red flag. I knew something was off.

Alongside the fevers, I was:

Constantly congested
Always carrying tissues
Dealing with ongoing sinus, throat, larynx and chest infections
Puffy in the face
Husky in the voice (which I didn’t mind, but it wasn’t normal for me)
Sneezing, coughing, and feeling unwell far more often than anyone should

I was also having frequent coughing fits, and every now and then I’d choke on a mouthful of food. At the time, I brushed it off. I genuinely thought I was just being a bit of a pig, eating too fast, not chewing properly. It never occurred to me that something structural or inflammatory could be going on.

It felt like my immune system was permanently switched on.

Because my mum passed away from bowel cancer, I was sent for a precautionary colonoscopy. While I was under, the doctor checked my throat as well. That decision changed everything.

They found EOE.

What Is EOE, Really?

EOE is a chronic inflammatory condition where a specific white blood cell; the eosinophil, builds up in the lining of the oesophagus.

Eosinophils are part of your immune system. They’re useful in the right context (like fighting parasites), but when they’re activated unnecessarily, usually due to food triggers or allergens, they cause ongoing inflammation and tissue damage.

In EOE, this inflammation can:

Thicken and stiffen the oesophagus
Cause swelling and narrowing
Disrupt swallowing
Create a constant inflammatory response that doesn’t stay neatly confined to the throat

This is why EOE is now understood as part of a broader immune‑driven inflammatory picture, not just a “food getting stuck” problem. (https://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/symptoms-causes/syc-20372197)

Why Choking Gets All the Attention (But Isn’t the Whole Story)

EOE is often talked about in terms of choking, because:

Swelling narrows the oesophagus
Food can become lodged
Many people end up in emergency having food removed

Importantly:

The airway (windpipe) is usually still open
You’re not suffocating in the classic sense

That said, choking is understandably terrifying, and in some cases food can spill into the airway, which is frightening and dangerous.

For me, though, choking was not the main issue.

My biggest problem was constant systemic inflammation, the congestion, infections, fevers, and feeling unwell all the time.

The Sinus Puzzle (And Why It Wasn’t My Sinuses)

Years earlier, I’d had sinus surgery, and at first I assumed the problem had returned, maybe scar tissue, maybe regrowth, maybe blockage.

So I went back to have my sinuses checked.

They were fine.

That’s when doctors had to look beyond the sinuses and ask:

“If everything here looks normal, what’s driving all this inflammation?”

EOE turned out to be the missing link.

Why EOE Links With Asthma, Fibromyalgia & Other Conditions

EOE rarely exists in isolation.

It’s commonly associated with:

Asthma
Eczema, dermatitis, psoriasis
Hay fever and allergies
Fibromyalgia
Other immune or inflammatory conditions

The common thread is immune dysregulation and chronic inflammation.

When your immune system is repeatedly triggered:

Inflammatory chemicals (cytokines, histamines) circulate through the body
Tissues become hypersensitive
Pain signalling increases
Fatigue increases
Healing slows

This is why reducing inflammation doesn’t just help one condition; it often helps many at once.

Why Lowering Inflammation Matters (The Science Bit)

Chronic inflammation is not the same as short‑term inflammation.

Short‑term inflammation = helpful (healing an injury, fighting infection)
Chronic inflammation = damaging

Long‑term inflammation:

Keeps the immune system in a constant state of alert
Damages tissues over time
Increases pain sensitivity
Disrupts hormone balance
Increases the risk of autoimmune flare‑ups and chronic illness

When inflammation is reduced:

Immune signalling calms
Tissues get a chance to repair
Pain and fatigue often lessen
Comorbid conditions (like asthma and fibro) are easier to manage

This is why dietary changes, while restrictive, can be profoundly protective.

Food, Triggers & Why “Just One Night” Isn’t Just One Night

After my diagnosis, I changed how I eat; and it helped enough that I didn’t qualify for a drug trial my specialist was running.

That sounds like a win (and it is), but it also means the responsibility is ongoing.

Recently, I was out with friends and joked about wanting a late‑night service‑station sausage roll with sauce.

My friends said:

“Just have it; it’s one night of pain.”

But that’s the part people don’t understand.

For me, it’s not one night.

It’s:

Months of sinus infections
Chest infections
Throat and larynx irritation
Constant sneezing and coughing
Low‑grade fevers returning
My immune system spiralling back into overdrive

Once that inflammatory cycle restarts, it takes a long time to calm again.

Living With EOE Is Invisible Work

EOE isn’t always dramatic.

There’s no cast. No obvious injury. No single symptom people can easily see.

But it affects:

What you eat
How you socialise
How often you get sick
Your energy levels
Your long‑term health

And because it’s poorly understood, many people suffer for years before being diagnosed; often being told it’s anxiety, reflux, sinus issues, or “just one of those things”.