The story of Stella
My name is Stella. I am a qualified chef who happens to have food allergies, and a chronic condition called Eosinophilic Oesophagitis, shortened to EoE, which is also triggered by food and, in some cases, environmental triggers such as perfumes and air sprays.
It wasn’t until September 2016 that I got a diagnosis, at the age of 50, and after many years of arguing with Doctors, hospital consultants, and my family, and moving across the country.
Where did my journey begin?
I was born at home, and soon after my arrival, I was taken by ambulance, in an incubator, to hospital because I couldn’t feed. I don’t know what happened to me there, no-one can find any of my medical records from before 1982! So, I have to rely on my sister to fill in the information. I am told that I was unable to feed, and that I was in hospital for 10 days. My mother had to stay at home, and I was visited by my sister, who brought milk that Mum had expressed. Bear in mind this was 1966, so refrigeration wasn’t as it is now, and it was an hour’s journey to the hospital, so who knows if I ever actually had my mother’s milk.
I don’t remember much from before I was 4 years old, but I do remember being sick, my stomach hurting, and being told off and punished for either taking a long time over meals or refusing to eat them. Back in 1966 EoE and allergies were almost unheard of. I was labelled a ‘sickly child’, attention seeking, naughty, a slow eater, or ‘fussy’.
I was bullied for many reasons through my school life, my surname being slow at everything, being tired, feeling unwell, getting allergy rashes, wearing glasses, being good at singing…. These were all ‘good reasons’ for my peers to poke fun at, pick on, and avoid me, I was fair game! But the worst was being forced to eat. At school and at home I had to ‘sit there until you’ve eaten it’. If I refused, it was either forced in, or served up again for every meal until it was eaten or mouldy. Sometimes there was projectile vomiting, sometimes I couldn’t swallow the food, then there were the migraines, constipation and diarrhoea, and lethargy. We’ll never know if any of the upset stomach was actually food poisoning, but it’s possible.
Back then, there was no recognition of such conditions. ‘Oh, she’s got a tummy bug again’, or, ‘children are like that’ was the commonplace thought. Our parents were told ‘they’ll grow out of it’, which is still said by many people. Yes, it is possible to ‘grow out of’ some allergies, however, it is also possible to grow into more of them. Allergies can change and increase as we age.
Today, children are still bullied and belittled because of all manner of illnesses, particularly allergies. There is no legal obligation for schools to provide for their needs. Medication is often locked away in the school office, instead of being on hand for immediate, lifesaving use.
Time is wasted and lives are put at risk unnecessarily.
Times have changed, and these days children are more valued, respected, and listened to, for which I am grateful. When I was a child ‘children should be seen and not heard’, and ‘spare the rod and spoil the child’ meant a smack for moving without permission, never mind speaking or having an opinion!
As the years went by, I learned ways to avoid eating, ways to cope with life around food, and how to stand up for myself.
Now, I have been referred to a consultant who knows much more about EoE, and I feel that progress is being made and I am being heard at long last. I have been prescribed the latest licensed medication , which has been of some help.
Having recently had an endoscopy, where biopsies were taken, and a dilatation performed (had my oesophagus stretched), I have found it easier to eat more foods, though some things still cause problems. Thankfully, the biopsy results are encouraging, as it shows great reduction in the inflammation. This is not the end of my journey, though, as EoE is a lifelong , chronic condition, that will need to be monitored regularly.Â