THE co-owner of Grasmere Gingerbread® today urged fellow Cumbrian businesses to be aware of customers wearing a ‘sunflower’ lanyard that indicates they suffer from hidden disabilities.
Joanne Hunter, 53, began wearing one after she was diagnosed with Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome in 2018.
“Whilst others may have thought of me as an energetic, creative person – which I am – behind the scenes I have been often been chronically unwell, utterly fatigued and in terrible pain,” she explained.
EDS sufferers experience a wide range of debilitating health problems including anxiety and depression whilst those with MCAS may also suffer from a vast range of allergic reactions and symptoms.
“On the rare occasions I ventured out since the start of the Covid pandemic – as I was shielding for months – I wore my sunflower lanyard,” she said.
“If people know what the sunflower lanyard symbolises then they might understand that my ‘normal’ is not necessarily what their ‘normal’ is.”
Staff members at the Grasmere Gingerbread Shop have been made aware of the lanyard and how to deal with customers wearing one.
“As it is National Customer Service Week I wanted to appeal to all businesses and organisations dealing with the public to raise awareness about the lanyard,” explained Joanne.
Of her EDS condition Joanne explained that sufferers are actually referred to as ‘zebras’ because even though all zebras have stripes, none of their stripes are identical. Similarly, symptoms from EDS vary enormously.
“Medical students are taught that if you hear hoof beats behind you, don’t expect a zebra. Instead, anticipate a common – not unusual – hoofed animal like a horse. Similarly, expect a common diagnosis,” said Joanne.
“But the problem is that EDS patients – who can suffer so many different types of debilitating symptoms – go undiagnosed for years.
“Not being heard or understood makes you feel like a fraud or that everything is in your imagination. It is very frightening.”
“Whilst my conditions are not necessarily obvious sometimes I might suddenly experience severe pain, light-headedness, a brain fog, or nausea.
“Thankfully, my sunflower lanyard makes me feel a little easier as more and more people do understand what it means.
“Since I was a little girl I have always loved sunflowers for their unusual height and bright yellow petals and furry centres.
“They always made me feel positive and happy. Now, suffering from EDS, sunflowers on my lanyard makes me feel that little bit safer.”
