Emily Pride’s world turned upside down when, at 14, she was diagnosed with a string of painful and life-changing conditions. She tells us how UCLH’s complex pain team gave back her life.
Emily was a healthy, sporty teenager when, out of the blue, she fainted at school. Over the next four years, she battled symptoms from heart rhythm problems to debilitating fatigue and severe pain.
Bedridden for almost two years, her stomach stopped working, eating or drinking left her doubled up in pain and she had no choice but to give up the sports she loved, from ballet dancing to figure skating.
Doctors at various hospitals around London tried to help but, with different doctors treating different symptoms, Emily’s illness wasn’t tackled as a whole.
Emily, who is now 20, said: “It got to the point where I got incredibly sick. I looked terrible and I was in agony all the time.”
By the time she was in sixth form, she’d lost more than a quarter of her body weight and she was admitted to UCLH and introduced to the complex pain team.
The team, whose members include pain consultants, physiotherapists and other therapists, slowly helped Emily to come to terms with having functional gut disorder – a condition in which her brain and body react as if her bowel is studded with ulcers.
“I find purpose, meaning and joy in every day”
They introduced her to cognitive behavioural therapy, gave her practical advice on how to cope with pain during her day-to-day life and, perhaps most importantly, realised that her symptoms needed to be evaluated and treated together.
This led to experts in different areas of medicine sitting down with Emily and her parents and coming up with a comprehensive treatment plan which included inserting a feeding tube through her nose and down into her stomach.
After a year of treatment and support, Emily started to dance and figure skate again and spent almost a year travelling the world, visiting relatives in New Zealand, sampling street food in Vietnam and working in Sydney.
She said: “I went bungee jumping, I climbed mountains and swam in the sea – I lived life to the full.”
Now back in London, Emily is working in web development. She is still seriously ill but her life is very different.
“The complex pain team changed the rules for me.
“I used to live every day waiting for the day in which I was cured. Now, I accept the fact that I might never be in full health.
“But sickness doesn’t make my life any less meaningful. I am learning to live with my illness and I find purpose, meaning and joy in every day.”