Home Blog Epilepsy ‘Living with epilepsy is like having an invisible disability’

‘Living with epilepsy is like having an invisible disability’

RachelRachel Hanretty can tell when she is about to have a seizure.

She can feel it hanging over her. A tingling sensation begins to creep up her arm. Although she fights against it, she can feel her focus slipping away as noises like a coffee machine grinding the beans absorb her hearing.

On the outside, the seizure shows no physical signs. Rachel does not shake and does not demonstrate any unusual behaviour.

But within her head an electrical storm is taking place as the neurones struggle to transmit the electrical impulses that send messages around the brain.

She is having a simple partial (absence) seizure. If someone were to speak to her she knows she would not be fully engaged in the conversation. She can only gesture to her family around her that she is having a seizure.

The overriding feeling she feels following a seizure is embarrassment. A feeling she believes stems from people’s misunderstanding about what epilepsy is.

“People may not even notice that I am having a seizure unless they are speaking to me because then I won’t be able to reply coherently,” said Rachel, from Glasgow.

“When I started a new job last summer someone was speaking to me and I had a seizure and it was so embarrassing because I had to speak to them afterwards.

“I think that people are scared of epilepsy. They are confused by it and this makes you feel worse because you feel like you have caused this confusion

“If I have a seizure I spend most of my time apologising for it whereas if it was viewed as normal then I wouldn’t feel the need to apologise.

“It is like an invisible disability. And there is still a shame attached to it.”

Epilepsy is a neurological condition which occurs when there is a tendency to have recurring seizures. An estimated 54,000 people in Scotland have the condition with eight newly diagnosed cases every day.

There are around 40 different types of epilepsy. A seizure can affect a small part of the brain, such as a simple partial (absence) seizure or it can involve the whole brain for a few minutes – a generalised seizure.

Tonic-clonic seizures are where the person falls down, convulses and then goes limp – this is often what the public think of as an example of a seizure.

Rachel had a tonic-clonic seizure when she was 11-years-old. She then began having a number of ‘funny moments’ where her vision became warped and she started seeing people and things. These were later discovered to be simple partial seizures.

Medication after medication was tried to control these seizures. At its worst, she was having about ten seizures every day.

Then, just before her 15th birthday, she received the best present she could have wished for.

“I was taken in for a MRI scan and found that a calcification on my right temple lobe. Because they were able to locate it, they were able to cut it out,” she said.

“Having the operation was wonderful and I was very lucky because not everyone has that opportunity. And then I didn’t have epilepsy.”

Relishing in her new sense of freedom, Rachel learned how to drive, enrolled at St Andrew’s University to study French and English and squeezed in a gap year in Paris.

Confusion. Panic. That horrible feeling that you have been here before. These thoughts came streaming into Rachel’s mind in 2010.

She had just returned from Paris. Epilepsy was long gone, or so she thought.

“I cannot tell you what it is like to wake up and see paramedics and feel this horrible sense of déjà vu,” she said.

“I knew it wasn’t a TV show or a film, it was real life.

“I had had a tonic-clonic seizure and fell onto very hard kitchen tiles and cut my face.

“I was immediately put on medication. But the medication really disagreed with me and I became really erratic and emotional. I just didn’t feel like myself.”

The effects of this medication took its toll on Rachel and in September 2011 it was decided her medication should be changed.

This resulted in her simple partial (absence) seizures returning – but it was a trade-off she was willing to make.

“I am still having seizures but at least now I feel normal. It wasn’t a difficult choice because I wanted my normal self back.”

Rachel put her feelings about epilepsy onto paper and wrote a novel. She did it to help express her thoughts, but she also wanted a way to explain to others that there is no shame or embarrassment in having epilepsy.

On National Doodle Day – a campaign by charity Epilepsy Action which aims to raise awareness and money for epilepsy services – she hopes to do her bit towards promoting understanding about the condition.

Improvement in care was taken one step closer on Friday, February 8 when charity Quarriers received the keys to a new specialist independent hospital in Glasgow.

The £6.4m William Quarrier Scottish Epilepsy Centre will have state-of-the-art equipment offering assessment and diagnosis for people with complex epilepsy and diagnosis where the condition is uncertain.

“I think that people can digest feelings through fiction better than they can through facts,” Rachel said.

“I hope that if they read my book, they might understand epilepsy a bit better.

“It is difficult with epilepsy because they are some people out there who are completely dependent on others and can’t leave the house without thinking they are going to collapse in the street.

“And then there is little old me here who only has a few of these mild seizures a few times a month. So I know that I don’t have much to complain about and sometimes I feel like I shouldn’t be making a big drama about having epilepsy.

“But I do think we need stop being scared or embarrassed to talk about it and stop saying ‘Oh why is she getting on her high horse’.

“My main aim is for someone to know that it is ok to say that they sometimes feel down about having epilepsy – no matter what type – and be reassured that it is not something to be scared about it and ask for help.”

Source: STV TV

Comments

  1. wrote on February 8th, 2013 at 12:29 pm

    Angelina Vilchez

    I have lived with Epilepsy for 29 years and I am getting so tired of every one thinking and acting that just because I take my meds daily and its controlled that Epilepsy is not affecting me in any other ways.When it has caused me a bad learning and memory problem. Every one blames it on my medication and that has nothing to do wit it!!!

  2. wrote on February 8th, 2013 at 12:29 pm

    Katrina Kilgore

    I say that all the time. If you don’t tell someone, or take a seizure, they’d never know.

  3. wrote on February 8th, 2013 at 1:28 pm

    Mandy Wright

    I have Epilepsy and i wear a band saying i have it so people are aware i have it i tell people i have a learning rpoblem in understanding and a memory of forgetting things too so they know i say it’s to do with my Epilepsy

  4. wrote on February 8th, 2013 at 2:28 pm

    Chuck Carmen

    Great idea Mandy. that is one reason we have posted the new QR Lifesupport and it is in Purple so we can tell everyone about epilepsy when they ask.

  5. wrote on February 8th, 2013 at 2:28 pm

    Lisa Hutchinson

    I’m glad you posted the qr life support Chuck Carmen because Mandy Wright is my sister and to tell you the truth I had forgot what to do so yes I am very grateful so thankyou very much where can I buy a band in support of epilepsy please

  6. wrote on February 8th, 2013 at 2:29 pm

    Johnny Keller

    mine did not always have that warning thing going on. Sometimes I would just have them. I have had brain surgery and now I have made it two years free

  7. Profile photo of Cheryl Hosea-Bielke
    wrote on February 8th, 2013 at 2:43 pm

    Cheryl Hosea-Bielke

    Rachel Thank you for sharing my daughter has had seizures for 22 years and hers have left her disabled. She cannot have any alone time with out having a camera monitoring her or a family member by side. I am glad that you are able to be out in the community and I think the communities need a lot more education towards seizures.

  8. wrote on February 8th, 2013 at 5:29 pm

    Angelina Vilchez

    I think word of mouth is the best way to let them know.No one can say that I dont tell them.I also tell them because I have a bad learning and memory problem.Thats my biggest reason too!

  9. wrote on February 8th, 2013 at 5:51 pm

    Gatewood Campbell

    Thank you for sharing this story. It is comforting to know there are kindred souls out there.

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