“Just Swallow”: The Not-So-Simple Reality of Eating with EDS and Chiari Malformation

By Antonia@UnremarkableMe – warm, witty, and occasionally betrayed by mashed potatoes

For most people, swallowing is a background task—an automatic, barely-noticed moment of bodily cooperation. But if you live with Ehlers-Danlos Syndrome (EDS), Chiari malformation, or the particularly fabulous combo platter of both, swallowing can be a daily adventure in neurological roulette.

Dysphagia—if we’re feeling fancy—is the medical term for difficulty swallowing. And if you’ve experienced it, you’ll know it’s a deeply misunderstood and wildly unpredictable part of life with these conditions. It's less “chew and swallow” and more “hold your breath, assume the position, and hope this bite doesn’t try to assassinate you.”

So, let’s unpack what’s really going on when eating turns into an Olympic event—and how you can manage it without completely losing your marbles (or your mashed peas).

Why Swallowing Can Be a Total Drama Queen

EDS Warriors: Bend, Snap... Gag?

EDS is that connective tissue condition known for hypermobility, joint pain, and a whole buffet of other party tricks. Unfortunately, the bendiness extends inside too, and your esophagus doesn’t get a free pass.

• Weak Connective Tissue: The esophagus is basically a stretchy muscular tube. In EDS, your connective tissue is more like soggy tissue paper. This makes it harder for food to move smoothly downward, leading to regurgitation, stuck sensations, and occasional existential dread.👉 Ehlers-Danlos Society – Gastrointestinal Manifestations

• Gastroesophageal Reflux Disease (GERD): That sleepy little muscle at the bottom of the esophagus—your lower esophageal sphincter—is often too relaxed in EDS folks. This leads to acid reflux, heartburn, and the charming sensation of lava crawling back up your throat after dinner. NHS – Heartburn and Acid Reflux

• Cervical Instability: When your neck joints move too much (as they love to do in EDS), they can irritate the cranial nerves responsible for swallowing. That means each bite is a gamble—will this one go down smoothly or trigger a cough-a-thon?

• Muscle Fatigue: Everything in your body works overtime to compensate for floppy tissue. Even the simple act of swallowing can wear you out like you’ve just run a sprint. It's not dramatic—it's biomechanics.

  
  

Chiari Champions: Your Brainstem Has Entered the Chat

Chiari malformation is when part of your brain (the cerebellar tonsils) herniates downward into your spinal canal. It’s like your brain saying, “I need more room,” and then bulldozing through important structures that handle, well… everything.

• Brainstem Compression: Your brainstem is the central office for the cranial nerves involved in swallowing—specifically cranial nerves IX (glossopharyngeal), X (vagus), and XII (hypoglossal). Chiari pressure on the brainstem interrupts the coordination between tongue, throat, and esophagus, leading to delayed, weak, or incomplete swallows. Conquer Chiari – Symptoms

• Delayed Swallow Reflex: Chiari can mess with the medulla oblongata, where the swallowing reflex lives. That means your body might “buffer” before committing to a swallow. Cue: the weird, frozen mid-bite moment when everything inside just… stalls.

• Dysautonomia & Poor Coordination: Chiari is often accompanied by dysautonomia, meaning your autonomic nervous system (responsible for involuntary actions like swallowing and digesting) might throw a wrench in the works. It affects the timing and strength of muscle contractions, saliva control, and sphincter function. Basically, your body can ghost you in the middle of a meal.

Antonia's Interjection Corner™ I once choked on my own saliva while reading. Not even eating. Just sitting quietly, being a respectable adult, when my throat suddenly decided to break up with me. If anyone ever questions the severity of Chiari, just tell them your brain tried to evict itself and sabotage dinner in one go.

The EDS + Chiari Combo Platter: A Swallowing Nightmare à la Mode

When both conditions are in play, you’re essentially running the dysphagia gauntlet: nerve misfires, floppy muscles, brainstem interference, and acid reflux all working together like the worst boy band reunion tour imaginable.

Some days, you can eat normally. Other days, yogurt feels like a health hazard. The unpredictability is half the stress—especially when people keep saying unhelpful things like, “Just chew slower.” Thanks, Janet. I’ll alert my brainstem.

How to Outsmart Dysphagia (or at Least Make It Behave)

This isn’t about curing it—let’s be real. But managing it? That’s doable. Here’s how.

Dietary Tweaks

• Stick to soft foods—soups, smoothies, mashed potatoes. Basically, anything you'd serve to a Victorian invalid or your favourite grandma.

• Add thickening agents to liquids to slow their roll and reduce aspiration risk. IDDSI Framework – International Dysphagia Diet Standardisation Initiative

Posture and Positioning

• A speech and language therapist (SLT) can assess your specific issues and offer personalized strategies. Chin tucking while swallowing, changing your head position slightly—tiny tweaks can yield big results. Royal College of Speech and Language Therapists – Dysphagia Advice

Tame the Acid Beast

• Medications like proton pump inhibitors (PPIs) or H2 blockers can reduce reflux flare-ups.

• Avoid big meals, trigger foods (yes, spicy nachos, we mourn you), and late-night snacking.

Therapy for Strength and Coordination

• SLTs can provide muscle-strengthening exercises for your throat and jaw. Think of it as pilates for your pharynx.

• Neuromuscular electrical stimulation (NMES) is sometimes used for severe cases—think electrotherapy, but gentler and less Frankenstein-y.

Surgery for Chiari

• In more severe cases, decompression surgery can relieve pressure on the brainstem and improve swallowing, breathing, and coordination. It’s not a small decision, but for some, it’s the relief they’ve been waiting for.NHS – Chiari Malformation Treatment

Feeding Tubes Are Not Failure

• If things get truly unsafe, feeding tubes can be a temporary or long-term option to prevent malnutrition and aspiration. It’s not giving up—it’s refusing to starve while society catches up with our diagnosis.

  
  

When to Call in the Pros

Some occasional swallowing weirdness is part of the chronic illness package. But there are red flags that mean it’s time to speak up:

• Frequent coughing or choking while eating or drinking

• Unexplained weight loss

• Recurring chest infections (a sign of aspiration)

• Pain while swallowing

• Dehydration from avoiding fluids NHS – Dysphagia

  
  

Final Thoughts: You’re Doing Amazing, Sweetie (Even If You Choke on Water Sometimes)

Swallowing isn’t something people think about—until it goes wrong. And when you live with EDS or Chiari, it’s easy to feel like your own body is gaslighting you: “No issues here,” it says, while you’re casually hacking up mashed bananas.

But here’s the thing: you’re not dramatic. You’re not overreacting. You’re managing complex, overlapping conditions with resilience, creativity, and frankly, stellar snack workaround strategies.

So the next time someone says, “Just chew and swallow,” feel free to raise an eyebrow and say, “Sure, right after I reboot my nervous system and renegotiate my cranial nerve pathways.”

You’re doing your best—and that’s more than enough.