Hidden condition leaves woman with broken teeth and burns on her face

A woman is living in constant fear due to her severe epilepsy and "tonic clonic" seizures that leave her with no warning before they strike. The invisible condition has resulted in broken teeth, a busted nose, and facial burns for Emma Evens, who also faces disbelief from those around her.

Emma, a 34-year-old executive assistant from Wickford, Essex, told NeedToKnow: "I don't get a warning when a seizure is coming on," and "It's hard to pinpoint what triggers them; it could be heat, exercise, stress or not eating and drinking enough. I lose consciousness, make a loud noise and collapse.

"My body becomes rigid and jerks, but once that's over, I just lay unconscious while my breathing stabilises. I've fallen so many times and seriously injured myself.

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"I couldn't tally 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 now terrified to cook alone. I need help getting in and out of the shower or bath; [and driving is out of the question]. Every day is a struggle – and I never feel safe."

Emma, who has been living with seizures since the age of six, has struggled to hold down a job due to the stigma surrounding her condition, reports . She revealed that she has often been made to feel like a victim and a liar throughout her working life, saying: "I've been made to feel victimised and like a liar throughout most of my working life."

She recalled one particularly challenging period when her seizures were frequent: "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."

She pointed out that her seizures were beyond her control: "It's not my fault; it's not like I can control them."

Emma felt that her disability was not being taken seriously and that she was being taken advantage of: "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."

To make matters worse, her colleagues began to shun her due to their fears about her seizures: "And not only that, colleagues avoided me out of fears I'd have a seizure in front of them."

Summing up her ordeal, Emma expressed: "It's just degrading."

However, in her present position, she has found a compassionate working environment with a line manager who understands her requirements.

Emma insists that there is an urgent need to enhance support for individuals with disabilities in the workplace: "All workplaces should have disability sickness, which is used for many people like myself, where it cannot be controlled."

She proposes distinguishing between sickness related to disability and general illnesses: "Coughs, colds or other general illnesses should come from one pot and disability sickness should come from another."

Emphasising the importance of awareness, Emma argues for improved education about such conditions among work teams: "There needs to be more education in teams, especially so people know what to do."

Now in a more reassuring job, Emma leads the disability network to foster understanding and drive change: "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."

Kindness and empathy are important in the workplace, as Emma explained: "There are so many people in the workplace and you don't know who might have a hidden disability. Be kind, understanding and supportive."

With no definitive solution for managing seizures, Emma takes preventive measures: "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."