Living With a Rare Digestive Disorder: What I Wish I Knew

When I was first told I had achalasia, I had never even heard of it. I’d spent months—if not years—feeling like I was choking every time I ate. The pressure in my chest, the weight of undigested food sitting in my oesophagus, and the constant anxiety around mealtimes were exhausting. But finally having a diagnosis came with its own challenges. I want to share my experience in the hope that someone else going through this might feel less alone. Here’s everything I wish I’d known sooner, including the small things that helped and the big lessons that changed how I live.

Getting the Diagnosis Was Just the Beginning

For years, I was told I had acid reflux or anxiety. Doctors gave me antacids and told me to eat slowly. But my symptoms were getting worse. Food would come back up hours after I ate, and I started losing weight without trying. I even stopped eating out altogether because I was terrified I’d choke in public.

Eventually, a referral to a gastroenterologist led to tests like manometry and a barium swallow. That’s when they confirmed it: achalasia, a rare disorder where the muscles in the oesophagus don’t work properly, and the lower oesophageal sphincter (LES) fails to relax. I was relieved to finally have a name for it—but I quickly realised that not many people, even some health professionals, knew much about how to manage it.

Food Became My Biggest Challenge

If you’ve just been diagnosed, you’ll probably hear this a lot: “Chew thoroughly,” “Eat smaller meals,” “Drink water after every bite.” But living with this condition means learning that there’s no one-size-fits-all solution.

Some days, porridge goes down easily. Other days, even soup can feel like swallowing glue. I kept a food diary at first, noting what triggered my symptoms, and it helped me make better choices. I also learnt to listen to my body. If I felt even slightly tight in the chest or sluggish after a meal, I adjusted.

What helped me most was discovering What To Eat If You Have Achalasia. That resource gave me specific examples of foods that are easier to swallow, as well as those to avoid. It helped take the guesswork out of daily decisions.

Natural Treatments That Eased My Symptoms

While medical options like balloon dilation or Heller myotomy are available, I wasn’t ready to go down the surgical route right away. I explored natural treatments first to see if I could manage my symptoms better through gentler means.

Here are a few that made a real difference in my daily life:

1. Herbal Teas

Chamomile and ginger teas helped relax my chest muscles after meals. I made a habit of sipping warm tea throughout the day, especially after eating. Peppermint didn’t work for me—it seemed to make things worse—but others with achalasia have found it soothing.

2. Slippery Elm

I found slippery elm powder incredibly helpful. It coats the lining of the oesophagus and makes swallowing smoother. I mixed it with water and took it before meals. It’s not a cure, but it made meals less stressful.

3. Postural Adjustments

I never lie down straight after eating. I also slightly incline my bed to let gravity help overnight. Sleeping flat always triggered chest pain and regurgitation.

4. Breathing Exercises and Relaxation

Stress absolutely made my achalasia worse. I started doing breathing exercises—deep, belly breaths that help ease chest tension. Meditation also helped reduce the anxiety that comes with eating.

The Mental Strain Is Just As Real

One of the hardest parts of living with achalasia isn’t just the food—it’s the isolation. Eating with friends or family becomes complicated. I’d often make excuses or skip meals just to avoid feeling embarrassed. I felt like I was always on alert, scanning for a bathroom or worrying if I’d choke.

Talking about it helped. Finding online support groups was life-changing. Reading other people’s stories and being able to ask questions gave me comfort. I wasn’t alone, and neither are you. If you’re reading this and feeling isolated, try to connect with others in forums or Facebook groups. The emotional support can be just as important as the medical one.

Practical Tips That Made Daily Life Easier

Through trial and error, I picked up habits that reduced the impact of achalasia on my daily life. These aren’t official medical advice, but they worked for me:

• Use a blender: Blending meals into a smooth consistency helped immensely, especially on difficult days.
• Take small bites and eat slowly: It’s annoying to be the last to finish, but it reduces choking risk.
• Warm food works better: Cold food made my muscles tense, while warm meals seemed easier to handle.
• Stay upright for at least 30 minutes after eating: This one is a must. Gravity really helps.
• Keep a “safe snacks” stash: I always carried something soft like banana or yoghurt in case I got hungry.

Medical Interventions: What I Eventually Chose

Eventually, I opted for pneumatic dilation. The non-surgical procedure involves inflating a balloon inside the oesophagus to widen the passage. It wasn’t a permanent fix, but it gave me significant relief for about a year. Some people need it done more than once, while others go on to have surgery.

Everyone’s path is different. My advice? Take your time. Ask as many questions as you need. If you’re unsure about a procedure, don’t be afraid to seek a second opinion.

Diet: What Works Best

The turning point for me came when I stopped trying to eat “normally” and instead built a diet that supported my condition. Knowing the Best Diet Plan For Achalasia Patients gave me structure.

Here’s a simple overview of what worked for me:

I completely avoided dry bread, red meat, nuts, and anything that felt scratchy going down. Water remained my constant companion during meals, helping push food along.

Looking Ahead With Hope

Achalasia has changed my life—but it hasn’t ruined it. I’ve learnt how to manage it, how to be kind to myself on hard days, and how to appreciate the moments when eating feels easy again. I’m still learning, still adjusting, and I expect that’ll continue for the rest of my life.

If you’re just starting your life with this diagnosis, please know that it does get easier. You’ll find a rhythm. You’ll learn what your body can and can’t tolerate. And you’ll adapt in ways you never thought possible.

You might also discover treatments, whether natural or medical, that provide real relief. The important thing is to stay informed, stay patient, and don’t give up on finding what works for you.

Final Thoughts

I never expected to live with a rare digestive disorder. But here I am. I’ve become my own advocate, learned to listen to my body, and found ways to keep going. Sharing this story is part of that process—because if someone had told me all this years ago, I might have felt a little more hopeful from the start.

Whether you’re newly diagnosed or years into this condition, I hope you find something here that helps you through. Living with achalasia isn’t easy—but with the right knowledge, support, and daily strategies, it’s definitely possible to live well.