Rachael’s Story – Achalasia

Tell us a little about you

I’m Rachael. I’m 37, a graphic designer and mum of two from Somerset. I love countryside walks, gaming with my son, and kitchen discos with my toddler. Food has always been central to my work, family, and life.

Can you describe when your symptoms started and what they were?

I first noticed symptoms after having COVID in December 2020. Chest pains and breathlessness lasted for months. My doctor said it was post-viral inflammation, but a year later, the pain worsened, and I started regurgitating food.

In January 2022, it started to feel like food was stuck at the bottom of my oesophagus, and I was referred to gastroenterology. They thought it was reflux and prescribed a PPI (a type of medicine that helps in managing the symptoms of heartburn and reflux), which didn’t help. An endoscopy (a thin tube with a small camera on the end inserted via the mouth) in April found nothing. I was told I had minor dysmotility and to “chew my food more.”  

After reading Guts UK’s resources, I asked about achalasia, but was told it was rare for someone young and healthy. Swallowing became painful, and oesophageal spasms were so intense I sometimes had to pull over during the school run. It spread to my back, jaw, and arm, feeling like a heart attack. I pushed for a barium swallow (a test that involves drinking a white liquid called barium that highlights the outline of the oesophagus, the food pipe) for answers. 

We’d been hoping for a second baby, but had to wait five months for an X-ray, which showed nothing. Without answers, we decided to go ahead, and I fell pregnant in April 2023. 

How did your symptoms affect your pregnancy? 

The start of my pregnancy was tough with symptoms and morning sickness combined. In my second trimester, I had an urgent endoscopy, which was scary as I needed sedation and worried for my baby. The consultant spotted possible achalasia, which was frustrating after my earlier concerns had been ignored.  

In the last months, I was eating less and less. My dietitian became a lifeline, helping me get nutrients and adapt my diet. Additional ultrasound scans reassured me the baby was okay, but I became severely anaemic (a condition that develops when your blood produces a lower-than-normal amount of healthy red blood cells) and required an iron infusion. 

How did this affect your relationship with food? 

That Christmas, I gave up trying solid food. I cooked Christmas dinner, but only managed a few sips of gravy. Cooking and sharing meals with family is a big part of who I am, so it felt like torture. The less I ate, the more I resented others eating around me, and meals became miserable. 

What was your experience during labour and birth? 

The week of my due date, I couldn’t keep anything down, not even water. Nobody understood, and one doctor said, “You don’t look that sick.” I hit rock bottom. My dietitian pushed for induction on medical grounds, but my baby arrived on her own. The labour was very fast, only three hours, as my body couldn’t carry the pregnancy anymore. 

My daughter was completely healthy, which was a huge relief, but within ten days, I lost nearly 20kg, falling far below my normal weight. Some people even complimented me on losing baby weight quickly, which felt horrifying.

When were you finally diagnosed with achalasia? 

Two months after giving birth, my barium swallow confirmed achalasia, but I wasn’t offered a follow-up to ask questions – just sent a letter recommending surgery and was put on a 20-plus-week waiting list. Good doctors are struggling within a challenging healthcare system. 

As I got more seriously unwell, I sought private care. My surgeon answered all my questions, assessed my symptoms, and recommended a manometry (a test that measures pressure waves in the oesophagus) to confirm the type of achalasia. After three and a half years, I was formally diagnosed with Type 2 achalasia. 

How did you feel when you received the diagnosis? 

I felt relieved, but terrified about what the future would hold. For a long time, I felt something severe was happening in my body, and this was the first time a medical professional agreed. I was worried about having a lifelong condition and daunted by decisions about treatment.  

What happened during the surgery? 

At that point, I was barely managing my limited diet of milk and liquid supplements, whilst breastfeeding full-time. None of it would stay down, and I was often vomiting a dozen times a day, relying on family and friends to care for my children. I looked scarily thin and hated seeing myself in the mirror.

I had my Heller’s Myotomy (a procedure that cuts the lining of the oesophagus and stomach) and fundoplication (surgery to treat severe and ongoing acid reflux) in September 2024. The first sip of water reaching my stomach felt amazing, but soon after discharge, I spiked a fever and was readmitted with pneumonia. My body was so weak and immunocompromised that it couldn’t handle recovery.  

I started bringing up liquids again and burst into tears, thinking the surgery hadn’t worked. I spent eight days on antibiotics with no nutrition and thought, “I’m going to die here”. I wasn’t well enough to see my children, which was very upsetting. My surgeon reassured me that I just had inflammation, and I would heal. I was put on total parenteral nutrition (TPN, feeding through the veins) and gradually built up to having water, soup, and soft foods. I spent nearly a month in hospital, but thankfully, my surgery was a success. 

What was the most emotional moment?  

One of the hardest things was how achalasia affected my ability to be a mother. I needed a lot of help and was often too tired to play with my children. It became impossible to put on a brave face; I was just too unwell, and this really affected my son. I was also heartbroken when I was in hospital and had to stop breastfeeding my baby; I felt robbed of my right to choose what was best for us. I worked hard to feed her again once I was well, but that moment made me determined not to let this condition take everything from me or my loved ones. 

How are you now? 

Achalasia has changed my perspective on life. It’s left me with scars, but also a deep appreciation for the small things we often take for granted. Now, enjoying a slice of cake with my son, a cup of tea with a friend, or ice cream at the beach with my toddler feels like a real celebration. I’m so grateful to be here. 

What is one thing you wish people knew about achalasia? 

I wish more medical professionals knew about achalasia and could recognise the symptoms early. No one should get as seriously ill as I did or come so close to losing everything. Living without being able to eat makes life incredibly hard. You lose joy, social interaction, and even the energy for simple tasks. Achalasia affects not just your body, but your day-to-day life, and early recognition can make a huge difference for anyone living with it.  

Why are you sharing your story?  

I’m sharing my story not to scare anyone, but to show that no matter how long it takes or how hard it gets, there is hope. Recovery is possible, and the pain and trauma are something you can start to put behind you.  

Why do you support Guts UK charity?  

I support Guts UK because they were an invaluable source of information when I didn’t know what was happening to me. They have created a community that will always support each other, no matter what digestive condition we suffer from, and we all understand how hard it can be.  

What you can do:

If you are interested in supporting our work in upper GI conditions, which has been underfunded for too long, please donate today. Discover the stem cell research we have funded into achalasia here.