A woman who has been left with broken teeth, a busted nose and burns on her face as a result of her hidden condition “fears” for her life every day.
Emma Evens suffers from severe epilepsy and “tonic clonic” seizures, which causes her body to stiffen and convulse.
The 34-year-old’s hidden disability is an “uphill battle” – but not only for her health.
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It negatively affects her social and work life, with people accusing Emma of “lying” about her symptoms.
“I don’t get a warning when a seizure is coming on,” the executive assistant, from Wickford, Essex, told Need To Know.
“It’s hard to say what triggers them; though it’s usually heat, exercise, stress or not eating and drinking enough.
“I become unconscious, make a loud noise and fall to the floor.
“My body stiffens and jerks, but once that’s stopped then I just lay unconscious while my breathing regulates.
“I’ve fallen so many times and really damaged myself.
“I couldn’t count how many stitches I’ve had.
“I’ve had them on my top right forehead, my nose, chin, lip and on my chest.
“The burn on my face from the cooker has left a scar and I’m terrified now to cook on my own.
“I have to have assistance when getting in and out of the shower or bath; [and driving is no go].
“Each day is an uphill battle – and I never feel safe.”
Emma, who has suffered with seizures since she was six-years-old, has also struggled to hold down jobs due to the stigma she faces.
She said: “I’ve been made to feel victimised and like a liar throughout most of my working life.
“I remember once, my seizures were quite bad and I was having one every other week.
“To recover, I’d need the next day off.
“However, these pushed my sick days up and eventually, I was approached by my line manager.
“In a meeting, they told me I was only allowed three sick days a month.
“I felt devastated.
“It’s not my fault; it’s not like I can control them.
“I hated that my condition wasn’t being treated as a disability but instead, as a way for me to get more time off work.
“And not only that, colleagues avoided me out of fears I’d have a seizure in front of them.
“It’s just degrading.”
Thankfully, in her current role, Emma’s line manager is a lot more understanding of her needs.
But she says more needs to be done in the workplace for people with conditions such as hers.
She added: “All workplaces should have disability sickness, which is used for many people like myself, where it cannot be controlled.
“Coughs, colds or other general illnesses should come from one pot and disability sickness should come from another.
“There needs to be more education in teams, especially so people know what to do.
“I have a good job now, I’m the leader of the disability network, and I’m able to finally start living my life without impending fear of getting told off at work.
“There are so many people in the workplace and you don’t know who might have a hidden disability.
“Be kind, understanding and supportive.
“I still haven’t worked out the secret to managing the seizures, but I try my best not to do things that usually bring them on.
“I’ve had to be careful with my social life, as I can’t have large amounts of alcohol since that’s usually a trigger, as are late nights.
“[When it comes to] dating, I want to make sure that my relationships don’t end up with them becoming my carer.
“But I’ve been in a relationship with my partner for 12 years and while he always looks after me, it’s good to maintain independence, too.”
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