Standing Up to Survive: The Rare Condition That Makes Eating Impossible

Imagine a life where the simple act of eating or drinking is a constant challenge, where you risk choking or suffering extreme pain every time you try to consume food. This is the daily reality for 25-year-old Elise Baynard, a healthcare worker from Dover, Kent, UK. Elise lives with a rare and debilitating disorder known as achalasia, which makes it nearly impossible for her to swallow food and liquids normally, often leaving her sick up to 60 times a day. To avoid choking, she is forced to stand every time she eats or drinks, an exhausting and distressing situation that has drastically altered her life.

For many people, swallowing food and drinking water are routine tasks they carry out without much thought. But for Elise, something as simple as drinking a glass of water or eating a sandwich comes with life-threatening risks. This rare condition has significantly impacted her daily existence, with her physical and mental well-being suffering as she battles a disorder that prevents her from consuming food and liquids in the way most of us take for granted.

What is Achalasia?

Achalasia is a rare disorder that affects the esophagus—the muscular tube that connects the mouth to the stomach. The condition primarily disrupts the normal function of the lower esophageal sphincter (LES), a ring of muscle located at the junction of the esophagus and stomach. In people with achalasia, the LES does not relax properly to allow food to pass into the stomach. This malfunction leads to difficulty swallowing (dysphagia) and can cause undigested food to be regurgitated back up the esophagus, sometimes even into the mouth. As a result, the body is unable to effectively process food, leading to malnutrition, weight loss, and a host of other complications.

Elise’s Struggles with Achalasia

Elise’s health journey began in January 2020 when she experienced sudden difficulty swallowing, chest tightness, and an inability to burp. She was initially misdiagnosed with acid reflux, and medication prescribed for this condition did little to improve her symptoms. As her condition worsened, Elise found herself struggling to eat solid foods like bread and pasta, with even drinking liquids becoming an increasingly difficult task. Her symptoms were so severe that one day she was sick 63 times, and even waking up in the middle of the night to drink water resulted in immediate regurgitation.

Elise’s daily life has become a struggle for survival, with each attempt to eat or drink leading to a painful, frustrating cycle of nausea, vomiting, and constant fear of choking. “It’s not a death sentence, but it’s no way to live,” she shared. The severity of her condition caused dramatic weight loss, and she now survives on a very restricted diet that consists mainly of cereal soaked in milk and crisps. Her body’s inability to process food properly has left her physically weak and emotionally drained.

Symptoms and Impact of Achalasia

Elise’s condition is a textbook example of the debilitating effects of achalasia. According to medical experts, achalasia manifests through several symptoms, including:

1. Difficulty swallowing (dysphagia) – Both solids and liquids become hard to swallow.
2. Regurgitation – Undigested food and liquids are brought back up from the stomach into the esophagus and mouth.
3. Chest pain – Intermittent pain, often described as tightness or pressure in the chest, can occur.
4. Weight loss – Due to difficulty eating and digesting food, individuals with achalasia often experience significant weight loss.
5. Heartburn – Despite the LES failure to relax, acid can still back up into the esophagus, leading to a sensation of heartburn.
6. Nocturnal cough – Food or liquid that regurgitates can irritate the throat and cause coughing at night.
7. Hiccups – Another common symptom that can be bothersome is persistent hiccups.

For Elise, these symptoms have escalated to a point where eating and drinking have become traumatic experiences. She now experiences unbearable pain from esophageal spasms, which cause sharp pain in her jaw, neck, and back, leaving her in tears at times. “It literally feels like having a heart attack,” she explained. Elise has been unable to go out to eat with friends, as she must always be near a bathroom and is fearful of becoming ill in public. The impact on her social life and mental health has been profound, and she continues to grapple with the isolation that accompanies such a rare, life-altering illness.

The Path to Diagnosis

Elise’s journey to a proper diagnosis was long and frustrating. For over a year, she saw multiple doctors and specialists, but her symptoms were either misdiagnosed or dismissed. It wasn’t until late 2021, after enduring countless tests, that Elise was finally referred to a gastroenterologist. Even after an endoscopy returned normal results, her condition continued to worsen. The breakthrough came in November 2024 when a specialist in London recognized her symptoms as achalasia, finally providing Elise with the diagnosis she had desperately been seeking for years.

The delayed diagnosis was particularly challenging for Elise, who was often told her symptoms were due to stress or minor issues. Yet, as her condition worsened, Elise became weaker and more fearful for her life. The diagnosis provided relief in that it confirmed she was not imagining her symptoms, but the reality of her condition was difficult to accept.

Causes of Achalasia

While the precise cause of achalasia remains unknown, medical experts suggest several theories. One theory proposes that achalasia may be an autoimmune disease, where the immune system mistakenly attacks the nerve cells in the esophagus and the LES. This immune response could cause the nerve cells to deteriorate, leading to muscle dysfunction in the esophagus and preventing the LES from relaxing. Without the proper function of these muscles, food and liquid cannot pass easily into the stomach, causing the symptoms associated with achalasia.

Another potential cause is a viral infection that triggers an autoimmune response. The theory suggests that a viral infection could damage the nerve cells in the esophagus, leading to the development of achalasia. However, further research is needed to fully understand the condition’s origins.

Treatment Options for Achalasia

Elise’s doctors have suggested a surgical procedure known as peroral endoscopic myotomy (POEM), which is considered one of the most effective treatments for achalasia. The POEM procedure involves making a small incision in the lining of the lower esophagus to cut away the muscles that are obstructing the LES. By doing so, the procedure creates more space for food and liquids to pass through the esophagus and into the stomach. POEM is less invasive than traditional surgery, and many patients experience significant improvements in their ability to swallow and digest food following the procedure.

In addition to POEM, other treatment options for achalasia include balloon dilation, which involves inserting a balloon into the esophagus and inflating it to widen the LES. For severe cases, esophagectomy—removal of the esophagus—may be considered as a last resort. The timing of treatment is critical, as early intervention can prevent further damage to the esophagus and improve long-term outcomes.

The Importance of Early Diagnosis

Elise’s story highlights the importance of early diagnosis and intervention in managing achalasia. Without a timely diagnosis, the condition can progress, leading to further complications such as malnutrition, severe weight loss, and a decline in overall health. Additionally, individuals with long-term achalasia may face an increased risk of developing esophageal cancer. Therefore, it is crucial for healthcare professionals to recognize the symptoms and provide the appropriate diagnostic tests to confirm the condition.

Living with Achalasia

Despite the challenges she faces, Elise remains hopeful for the future. While waiting for the procedure and treatment that could help improve her condition, she continues to advocate for better awareness of achalasia and the impact it has on people’s lives. Elise’s journey has been filled with immense pain, frustration, and uncertainty, but she continues to persevere, determined to regain some semblance of normalcy.

For those living with achalasia, it is essential to work closely with a team of healthcare professionals to manage the symptoms and explore treatment options. Support from family, friends, and fellow patients can also be crucial in helping individuals cope with the emotional and physical challenges that come with this rare disorder.

Achalasia is a rare but serious condition that disrupts the normal function of the esophagus, making it difficult for individuals to swallow food and liquids. Elise Baynard’s experience sheds light on the difficulties faced by those living with this condition, and highlights the importance of timely diagnosis and effective treatment. While there is no cure for achalasia, advances in treatment options like POEM offer hope for those struggling with the disorder. With continued research, awareness, and support, individuals with achalasia can look forward to better quality of life and improved outcomes.