THE BLOG

I Have Epilepsy, But I'm NOT Invisible

25/07/2017 13:43 BST | Updated 25/07/2017 13:43 BST
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I'm disabled.

Although, you wouldn't know from looking at me.

Actually, right now you would, because my last tonic clonic seizure left me with a limp, so right now I "look disabled"(yes I get people telling me that I "don't look disabled" all the time).

I was diagnosed with Epilepsy in 2014, however I've been having seizures since I was probably around eight years old, but ten years ago, I was definitely the life and soul of the party, regardless of the black outs I was having. At least that's what we called them, at the time we didn't know that they were tonic clonic seizures. I would lie in bed for days and not know what on earth was wrong with me. (In fact, last year I took part in a campaign with Epilepsy Action for a change in the NICE Guidelines so that GPs would be able to gain more training on early diagnosis. This was rejected by the Government.)

I thought that a diagnosis would bring me the closure and recognition I needed, but in fact, it seemed to make everything a million times worse.

It gave employers a reason to "let me go", because my seizures were a burden to the team.

It gave friends a reason to stop answering calls and texts, when they realised that medication doesn't stop the seizures immediately, but brings fatigue, muscle weakness, along with the constant exhaustion and memory loss from the seizures.

It gave my mother a reason to abandon me because she couldn't deal with the idea that her baby had opened a door to demons, allowing herself to be possessed and my sister just thought that I was putting on a show (I no longer talk to them).

It also makes relationships difficult! Both of my most serious relationships have been after my diagnosis and therefore, while I've been heavily medicated, so you can imagine how fun that's been. My current partner and I love to laugh about which passwords I've forgotten - just yesterday I forgot the master password to my password manager. Keeps things fresh!

I struggled through my Undergraduate years at University, however had amazing support with The Open University when I finally worked up the courage to do a Masters degree in English in 2015.

"They didn't want me".

I refused to allow Epilepsy to get in the way of my dream of teaching, and although I was highly qualified to train, my students were doing well and I looking after myself in order to control my seizures, I was relentlessly targeted anyway, until my seizures became so uncontrolled that my contract was terminated.

It didn't matter that I had proven myself as a promising teacher.

They didn't want me.

The worst thing about having an invisible disability, is the invisibility. TfL now have these blue badges, for people with hidden disabilities to wear when they need a seat, but people see me walking and at the moment, see me limping and don't offer their seats for me. I even wear a epilepsy bracelet too, with no extra effect. I've had multiple seizures in public and never been helped by a stranger, not once. Many of my seizures are complex partial seizures, not always the convulsions you see on television, so although you can tell that something is wrong with me when a seizure is happening, it's not always incredibly obvious and although I've fallen down during seizures, people have walked over me like I'm drunk, or pushed me. I get "auras", which are like warning signs before my seizures, so the best I can do is press the alert app on my phone, to let my partner know what's happening.

"astonishingly lonely"

The best thing about having epilepsy is having so many near-death experiences that teach you not to take life for granted. When I was diagnosed, my life was astonishingly lonely. I mentioned earlier that I used to be the life and soul of the party - hardly any of those friends are around anymore, however then I got connected with charities such as Epilepsy Action and met some incredible people on social media, because for some reason, from personal experience, people do not want to understand Epilepsy and how life-altering it is. Meeting people who know what I'm going through is a powerful game changer for this experience.

Apparently, one in four Brits have admitted to avoiding conversations with disabled people. In my previous job especially, I felt especially ostracised and was constantly referred to "normal" people and made to feel less than.

Is this why one in four Brits avoid us?

Is this why people don't dare to help an Epileptic having a seizure on the bus?

I'm not ashamed or embarrassed of being disabled.

I'm proud of who I am.

It's you who should be ashamed, if you don't want to give a helping hand or talk to us.

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We'd love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line 'EveryBody'.

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