Sophie May, a 30-year-old former competitive dancer from Walsall who represented England, was diagnosed with gastroparesis after years of being told her symptoms were due to Irritable Bowel Syndrome, stress, or 'all in her head'. The condition, which means food moves too slowly through the digestive system, left her unable to eat without vomiting undigested food hours later.
May, a clinical exercise physiologist, began experiencing bowel symptoms at the age of 16 and was repeatedly told they were caused by IBS. Her symptoms were later attributed to stress or being 'all in her head'. A Crohn's disease diagnosis came in 2022, but that condition, which causes inflammation in the digestive system, was not the sole cause of her issues.
A 'shopping list' of conditions complicated her diagnosis
May's journey to diagnosis was complicated by a 'shopping list' of digestive and chronic health conditions. She also lives with POTS, a condition that can cause an abnormally fast heart rate and dizziness when standing, and Ehlers-Danlos syndrome, a condition affecting the body's connective tissues causing symptoms of joint hypermobility and pain.
May said: “I started to become full very quickly. Even if I’d only had something small, it felt like I’d eaten a four-course Sunday dinner.” While in hospital with a suspected Crohn's flare-up last September, she began vomiting undigested food hours after eating.
She recalled: “At one point I went ten days without any bowel sounds or a bowel movement. I had X-rays that showed there was no physical obstruction and there was nothing that could be operated on, but my bowels just weren’t working.”
Feeding tube and hospital readmission
To support her nutrition, May had an NG feeding tube put in and was sent home. She lived with the tube until around January, when she chose to have it removed and tried to manage with liquids. She said: “I wanted to get back to work and didn’t want to go back with the tube. I think I was in denial that I needed it.”
She was readmitted to hospital in March this year after she could no longer keep fluids down, eat or have a bowel movement. Eventually, she was diagnosed with gastroparesis, a rare and often misunderstood stomach condition.
May said: “For me, getting the diagnosis of gastroparesis was validating because it meant there was a physical reason. After years of being told it was stress and this, that and the other, you do question yourself and think, ‘Is it just because it’s in my head?’ I was also really frustrated with the diagnosis because I hate having this shopping list of medical conditions.”
Raising awareness during Gastroparesis Awareness Month
May has shared her story with Guts UK to raise awareness of the condition during Gastroparesis Awareness Month. She said: “I’ve had people question why I’m not eating and assume it’s because I don’t want to eat. When actually I’m not eating because if I eat, I’m going to be sick. I’ve also had hints over the years that my symptoms were stress-related or that there was a mental health or eating disorder related reason for them.”
She added: “I think people need to realise that people aren’t faking being sick a lot of the time. We’re faking being well. I put on a brave face and go to work because I love my job, but people can’t see what’s going on underneath. Just because I ‘don’t look sick’ doesn’t mean I’m not.”
May, who used to dance jazz, contemporary lyrical and ballet, had to stop competing when she became really ill with Crohn’s disease in 2022. She said: “Now also having gastroparesis, I’m too ill to dance even just for fun.” She continues to live with a feeding tube, nearly a year after it was first fitted. She said: “Hearing other people’s stories has made me feel like I’m not alone. Gastroparesis isn’t something that many people are aware of. So many people could be suffering with this condition without knowing or it could be the reason for a lot of their symptoms. If sharing my story helps someone else recognise that what they’re experiencing could be something worth talking to their doctor about, then that’s really important to me.”
