Living with Achalasia

September is not only Rare Disease Month but also Achalasia Awareness Month. For me, this month carries a special weight because I live with achalasia — a rare esophageal disorder that makes eating and swallowing a daily challenge.

I’ve shared parts of my journey on social media, but I wanted to write this blog post for two reasons:

1. To help raise awareness about this rare condition.

2. To offer hope and reassurance to others living with achalasia.

Yes, achalasia changes your life. It changes how you eat, how you socialize, and how you manage stress. But it does not take away your ability to live a full and joyful life. I’m living proof. I’ve raised two children, built a business around food (ironically, my greatest struggle and greatest passion), and found ways to adapt so I can thrive.

If you’ve just been diagnosed, or if you’re struggling right now — please know this: you are not alone, and while there is no cure, there is still so much life to be lived.

What is Achalasia?

Achalasia is a rare disorder that makes it difficult for food and liquid to pass into the stomach. It happens when nerves in the esophagus are damaged, which prevents the esophagus from squeezing food down and stops the lower esophageal sphincter from relaxing. (The word Achalasia literally means “without relaxation.”)

It affects about 1 in 100,000 people worldwide, making it a rare disease. There is currently no known cure—only treatments that can help manage symptoms.

My Personal Journey

At just 21 years old, I suddenly couldn’t swallow or eat. For weeks, I lived on baby food until I was finally diagnosed with achalasia. By then, I weighed only 45 kg.

I underwent surgery, but complications followed—I landed in ICU with pneumonia after aspirating barium that had been stuck in my esophagus for over a month.

Despite everything, I believe my lifestyle and eating habits have allowed me to live a fairly normal life, raise two kids, and manage my symptoms. That doesn’t mean it’s easy—stress, daily routines, and even something as simple as dinner with friends can still be a challenge.

Food and cooking are both my greatest joy and my greatest struggle. I share my story to spread awareness and remind us all: you never know what someone else is going through. Always choose grace and kindness.

Symptoms of Achalasia

Common symptoms include:

• Difficulty swallowing (food and liquids)

• Bringing up undigested food (sometimes hours after eating)

• Choking and coughing fits (especially at night)

• Heartburn or burning sensation in the chest (often mistaken for reflux)

• Chest pain or spasms (sharp or squeezing pain not related to the heart)

• Gradual but significant weight loss (from difficulty eating)

• Pressure or discomfort when food gets stuck

• Symptoms that worsen during illness or stress

On an X-ray, the lower esophagus may appear pinched and narrow—this is called a “bird’s beak” sign.

Foods That Trigger My Symptoms

Over the years, I’ve learned which foods make swallowing and digestion much harder. For me, these include:

• Raw apples, carrots, broccoli, Brussels sprouts

• Some dried fruit

• Meat like steak, biltong, and dry chicken

• Dry grains such as couscous and bread

• Caffeine, alcohol, and excessive sugar

• Omelets and scrambled eggs

• Gluten and processed food

• Certain supplements and medicines in capsule form

How is Achalasia Diagnosed?

Diagnosis usually involves a combination of uncomfortable (and sometimes downright awful!) tests:

• Barium swallow X-ray – Swallowing a chalky liquid to watch how it moves down. (A month later, mine was still stuck in my esophagus, leading to aspiration and ICU.)

• Endoscopy – Inserting a camera down the throat to check for blockages. In the UK, they often do this without anesthesia, just a banana-flavored numbing spray—spoiler: it’s nothing like a holiday cocktail.

• Esophageal Manometry – A tube is passed through the nose, down into the esophagus, then slowly pulled out to measure pressure and muscle contractions. Not exactly spa-day material.

• 24-hour pH monitoring – A thin tube is passed through the nose, connected to a small recording device (like a Walkman you wear on your belt). It measures acid exposure and reflux over 24 hours.

Treatment Options

While there is no cure, there are several treatments that help relax the esophagus and improve swallowing:

• Botox injections – Relax the lower esophageal sphincter (temporary relief).

• Balloon dilation – Stretches the esophagus so food can pass more easily.

• POEM (Per Oral Endoscopic Myotomy) – A minimally invasive endoscopic procedure to cut the esophageal muscle.

• Heller Myotomy – Traditional surgical procedure to cut the lower esophageal sphincter. Today, it’s done laparoscopically (keyhole surgery), leaving just 5 small incisions. Often combined with a fundoplication to reduce reflux. This is the procedure I had many years ago.

Lifestyle Remedies That Help Me

Everyone’s experience is different, but here’s what works for me in managing symptoms day to day:

• Not eating later than 6pm

• Avoiding heavy meals, especially meat, in the evenings

• Eating slowly and mindfully

• Avoiding gluten, dairy, and sugar

• Exercising and reducing stress

• Breathing exercises and visiting a chiropractor

• Drinking peppermint tea or warm water

• Magnesium supplements to relax muscles

• Sleeping in an upright position, often with a wedge pillow

• Eating plain yogurt when dealing with painful gas/wind

Support & Community

Achalasia can be a very lonely disease. Many people are misdiagnosed at first—often told they have acid reflux (GERD) or even an eating disorder before finally receiving the correct diagnosis.

If you’ve been diagnosed, know that you are not alone. There are online communities, such as the Achalasia Support Group on Facebook, where people share advice, experiences, and encouragement.

My advice? Advocate for yourself, find a doctor who specializes in achalasia, and get treatment as soon as possible. While some live with severe symptoms—feeding tubes, oxygen, or other autoimmune complications—I count myself lucky and grateful that I’m still relatively healthy.

Final Thoughts

Living with achalasia isn’t easy. It affects how you eat, how you socialize, and how you think about your health every single day. But with the right treatments, lifestyle adjustments, and support, it is possible to live fully.

For me, food remains both my biggest challenge and my greatest love. Cooking, creating recipes, and sharing meals with my family keep me grounded. Most of the recipes on my blog lean toward healthy eating because I truly believe that lifestyle, diet, and stress management help me keep symptoms under control.

I hope my story not only raises awareness but also reminds others to lead with empathy. You never know what someone else might be going through — sometimes even at the dinner table.