Empathy

I love the word empathy, the ability to place yourself in someone else’s situation and see things from their perspective.

The world definitely needs more empathy.  How many problems do you think we would be able to avoid both personally and globally if every single person was able to consider others situations and feelings?

Many confuse empathy with sympathy but there is a great difference.

Imagine you saw someone who was homeless. If you saw them and felt sorry for them then that’s sympathy, but to feel empathy you’d consider what it would feel like to be them in their situation; the cold nights, the rain, the loneliness, the fear and suddenly the need to help them and the appreciation for their situation becomes stronger.

I came across this artwork by Valerio Loi and I loved it:

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I thought wouldn’t it be amazing if you could bottle empathy and pass it to someone who needed it? I soon found out that Valerio has created the same for love as well:

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And I thought yes! The world would be perfect if you could bottle love and the best of emotions and pass them onto others. This picture is implying that they are injected, but perhaps spraying them a like fragrance would be nicer? Imagine walking up to someone, say…Donald Trump, and being able to spray love and empathy in his face, that would be great.

(If you want, you can see more of Valerio Loi’s work here)

As we all go through life we meet other people and learn about their life and the journeys that they have been through. The one thing that has surprised me the most is that people who always appear the brightest and warmest are normally the ones with the most surprising lives. People that I’d known for years would divulge details of their lives to me that revealed extreme illness or loss that I never knew about. It only emphasised to me the quote from Robin Williams:

‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’

For me this also highlights the need for general empathy even more. Every person you meet requires consideration and thought. For example, if your boss is giving you a hard time one day and they are normally fine. Instead of thinking about how horrid they are, think that they may be having a rough day. They may be feeling ill. So instead of retaliating stay calm and maybe fetch them a cup of coffee to make them feel better.

This situation happened with me once. My boss rarely worked on site and he was a very nice man. But I had noticed that he was becoming more agitated. Granted, we had a lot of strict deadlines to meet and it was a stressful time. He phoned me the one day and was shouting down the phone at me… over nothing, I realised this was out of character for him. I spoke with my colleagues about it as I was concerned about him. One colleague thought he was just stressed but the other agreed with me that he was acting unusual, and we decided to keep an eye on him. We didn’t get the chance as he ended up having a mild heart attack a few days later. He was fine, don’t worry! But you can understand if I’d  perhaps defended myself, things could have been a lot worse, and I would have never forgiven myself.

When you have epilepsy you find that people rarely have empathy for you and your life. Some people show you sympathy, some show you false sympathy and others display fear.

When you do find someone who can empathise with your situation, it’s easy to notice. This person accepts you, will not ask prying and insensitive questions. They are just there for you and appreciate the situation you are in. I know that I am far from alone in wishing people would have more empathy towards epilepsy, and this isn’t just about epilepsy, this is about any condition, disability or disease. People should be able to tell others about themselves without fear of judgements, stigmas or negative comments.

How many situations do you think would have been altered in your life if other people showed more empathy to you? Or you perhaps showed more empathy to them?

Thanks for reading!

Becky 🙂

 

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Mothers Day

Here in the UK today it is Mother’s Day, so I thought I’d write a blog about my mum.
I honestly don’t know where I would be without my Mum. She has been such an important person in my life, like Mums are for so many people.

With regards to my epilepsy diagnosis it did leap into my life. I was young, I had no accidents and there was no family history of epilepsy. So I imagine the day that I had my first seizure must have come as a deep shock to my Mum and my family.

I often hear of how seizures can affect relatives emotionally after witnessing them.  I cannot imagine how my family must have felt the first time it happened, with no idea of what was going on or what was going to happen next.

Anytime I had to stay in the hospital my Mum would not leave my side,  sleeping in a chair overnight. I would plead for her to go home to have some rest, but she would tell me that she wouldn’t rest at home. At the time, I was about 14-16yrs of age, and thankfully the hospital was admitting me to the children’s ward which was deadly quiet. A few times I had a whole ward to myself. When I was about 17 I was told I had to go on the adult ward which meant my mum had to go home. That ward wasnt quiet!

My mum has been completely selfless like Mums are. When I was in uni, there were a number of times where my health took a downward turn, and before I could say anything my mum had booked the day off work to look after me.  She was just there whenever I needed her. And she still is.

My mum also taught me a huge amount of driving, and as I mentioned in a previous blog. As someone with epilepsy I NEVER thought that I would be able to drive. She had infinite patience and would take me out for little lessons after she’d been working a full day. She even booked a day off to take me on my test – which I passed, and she’d bought a card in readiness whether I’d passed or not 🙂

If I want to chat to someone about something that’s troubling me, she’s there,

If I need someone to join me for support at a hospital appointment, she’s there,

If I need anything, she’s there.

Everyone has someone in their lives who is their biggest support. I can proudly say that my mum is my biggest support, and the feelings mutual. She’d do anything for me and I’d do anything for her.

Happy Mothersday to all the Mums with epilepsy and to all the mums supporting their children with epilepsy, and happy PurpleDay too!

Becky 🙂

 

Feeling Sleeepy

 

For the last few days now all I have wanted to do is sleep. I think anyone with epilepsy will be able to empathise with this feeling!

I think it’s not only a side effect of my medication but also that my energy levels are a little lower than the average persons. I’ll do a full day of work and then want to be lazy and nap in the evening.

It’s something most people find hard to appreciate; even my own family finds it hard to understand. So, I have been feeling tired for a few days – not drained, but, you know that comfortable dozy feeling you have where if you just closed your eyes you’d be completely asleep? Well that’s how I’ve been feeling. I’ve been trying not to sleep the day away or drain my batteries either; I’ve just been taking things easy. Do some work…have a rest.

Sometimes when I have been working full-time, I come home and I just had to have a nap for about half an hour because I’ve felt so drained, but I always feel a million times better for doing so.

I have had many conversations with friends and family where sleep and rest has come into it. I am the type of person who likes to get my 8 hours and I would fear a job where  very early starts or shifts were required. I have great respect for people who do work shifts and nights, I really do. But to consider my health I know that I would quickly become unwell if I had to work shifts. But my own family and friends find it hard to understand this, saying that I would adjust, and that because I woke up at 9am the other day…I’m lazy. To be honest most of these comments are made in humour, and I know my limits and what I can and can’t do in order to be healthy.   I used to want to be a midwife, but knowing the long hours, shifts and stress that is involved in the job I soon realised that it might not be the perfect job for me.

I have had worse sleepy episodes. I used to be on one medication and its main side effect was sleepiness and I was sleeping all the time. It was actually my parents that sent me back to my consultant asking for alternative medication as the sleepy side effects were getting in the way of my day-to-day life.

But when you consider things, it makes sense that most medications have a sleepy side effect as they are calming the electrical activity in the brain. But if you too are feeling too sleepy and you know it is a side effect of your medication. Consider having a word with your consultant.

I know this sleepy phase won’t last long and providing I don’t stay up late and actually get some sleep when I get to bed I’ll be fine in a few days.

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Becky

Epilepsy Positivity

OK, this might be hard, I know. How can you look at epilepsy, the condition that takes away your independence and strength, and look at it positively?  Trust me there have been many days where I have hated what’s been happening to me and felt weak. I’m sure you have felt the same, its natural.

One time, I had been feeling down for days and it dawned on me that I could dwell on my sorrows for as long as I wanted – it’s not going to change my situation, my epilepsy was now a part of me and I could either keep fighting and be fearful of it, or I could accept it and embrace it. And if it happens, it happens. I just have to remember it’s not my fault.

I questioned the reasoning of how this ended up in my life, ‘why me’ – but it’s not going alter anything.  I quickly opened my eyes to the world around me, yes I my condition is nasty and I can’t do some of the things my friends do. But compared to so many other people in the world I am extremely lucky.

I noticed how much my family, and friends loved and cared for me. They don’t always show it in a mushy way, but they are they by my side when I need them.

Many philosophers and religions believe that we are here in life to learn lessons. I  then thought that maybe having epilepsy as part of my life is something that I need to learn from and be comfortable with.

Epilepsy can be a worrying and frightening experience for many people. I discovered that looking at my epilepsy in more of a positive light, helped remove a huge amount of anxiety for me.

However you currently feel about epilepsy, I hope everyone with epilepsy will be able to be positive and free from anxiety.

Becky 🙂

 

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Accepting Epilepsy – My Story

I was diagnosed with epilepsy when I was 14 years old. How did this affect me?

Initially I thought that I had coped immensely well and that the new diagnosis in my life had no impact on me. I was adamant that I was going to maintain a normal life as much as I could and not let epilepsy stop me from doing things I loved. Any outsider would have thought I was managing extremely well.

But when I looked back at my thoughts and feelings at this time and compared them to how I feel about my epilepsy today. I realised that I had some problems:

I found it hard to come to terms that I actually had epilepsy.

I know this sounds bizarre, but someone only told me that I’d had seizures and epilepsy. I didn’t witness these attacks, I just had to take their word for it. Yes, I felt unwell before and after the events and the doctors gave me brain scans etc. But you don’t witness epilepsy like perhaps someone with asthma.

I never doubted that I had epilepsy, but for a long time after I couldn’t even imagine myself having an unconscious seizure.  I can remember being in hospital once, and I tried to picture what it must have been like. Thinking (my teenage self) I hope I wasn’t embarrassing (not much you can do about that is there!). Then I thought of my parents, and how worried they must have been. But still, did this really happen…to me?

I didn’t want to hear about/see epilepsy in the media:

For a long time if I ever came across epilepsy on TV, films or news it always showed epilepsy in a negative light. It always seemed to be telling a story of a person with epilepsy who ‘died’, and it really frightening me. I know that there are dangers with epilepsy just like there are with most things in life, but to be constantly bombarded with the notion that epilepsy means death was very upsetting for a young teenager. So much so, that I isolated myself from anything online or on TV that mentioned epilepsy for quite a while. As I got older I realised that the sad stories are broadcast because they are very rare, if they happened all the time, it wouldn’t be news.

I saw a documentary called ‘Epilepsy and Me’ which I believe was on the BBC; I was very hesitant to watch it as I was afraid of becoming upset. I found the whole documentary really interesting and it educated others on the different aspects of epilepsy and how people live with it. Yes I found it a little upsetting to have to watch others suffering seizures but I think it also helped me accept my own epilepsy a lot more as I didn’t feel so alone.

I didn’t want to talk about my epilepsy:

I wouldn’t tell people I had epilepsy. I am confident that there are friends I went to school, college and uni with who probably never knew that I had epilepsy. Mostly people discovered about my epilepsy at pubs of all places, when they couldn’t understand why I was ordering a soft drink, and would ask if I was driving. I’d say that I didn’t drive. Then they HAD to know what was going on! So as you can guess, most dates deciphered that I had epilepsy within 10mins. What a mood killer.

I would also dread someone asking after my health. Close friends or family members would frequently enquire ‘how’ve you been recently? You know…Any troubles?’  For some reason it made me feel sick. As a teenager I wanted to put epilepsy to the back of my mind, and when people kept asking me about it, it reminded me of it too much, it depressed me and reminded me that this ‘thing’ could be making an appearance into my life again any day soon.

 

When you look over these three things it’s pretty obvious that deep down I wasn’t comfortable with my epilepsy. Epilepsy is a peculiar and difficult condition to come to terms with, so I can completely empathise with anyone else who has had a similar experience.

For such a long time I thought that I had no problem with my epilepsy until I realised that for years I had basically been trying to ignore it. Hoping it wasn’t going to pounce into my day and spoil it, whether that was the seizure itself or even just reading about it in the news! But as I got older I realised that my epilepsy is not an awful case, I still maintain a huge amount of independence and as things go I am extremely fortunate. I’ve learnt to embrace my epilepsy; I’ve learnt to accept it. It’s going to be a part of me for a very long time. It’s an extra thing that makes me a little more unique, and we are all amazing and unique!

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Explaining Epilepsy

Ok we’ve all experienced this, having to tell someone either that you have epilepsy or what epilepsy is…or both, and it can be difficult sometimes especially depending on the person or setting. The first few times I can remember wondering how I was going to explain the topic of epilepsy to another person.

I try and think of the quote from Albert Einstein, ‘If you can’t explain it to a six year old, you don’t understand it yourself.’

The following, is very similar to what I tell people who want to know more about epilepsy without it becoming too technical, I find it works well as people can relate to it easily:

Epilepsy can affect ANYONE. (Sorry to scare you, but it’s a fact.) Anyone can have a seizure if they are tired enough, if their temperature is too high or if their have had a brain injury. The average person has a strong seizure threshold meaning that they have to become very unwell to suffer a seizure, but a person with epilepsy has a weaker seizure threshold which results in them having seizure much more easily.

Yes, I have said this a few times and it has worked, people do seem to be able to relate to it I guess.

I know sometimes you feel like your on your own, explaining something over and over again to people about something which is quite unusual, and pretty complex. Thats why I went for my angle, it makes it appear less scary.

Sometimes I have tried to be more, well, matter of fact with, ‘We all have electrical activity in our brains, well epilepsy is a surge of that electrical activity…’ and they’ve already glazed over. But perhaps its just the people I know.

I am really interested to know what angles you take, if you choose to take them.
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Why am I here?

No, don’t worry I’m not getting that deep. I just feel that I should explain exactly what drove me to start a blog on epilepsy.

I have lived with epilepsy for over 10 years and I am utterly grateful to say that for the past few years it has now become controlled.

You now might be wondering, so why are you are you now writing a blog? But after I had controlled epilepsy I honestly thought that the struggles with telling people about it would be over, but they’re not. Only a few months ago, I left a job due to the fact that I knew my colleagues were unable to accept it professionally even though I insisted there was nothing to worry about. Many of my friends and family thought I was insane for leaving, but I feel that life is too short to be in a job you’re not happy with.

Naturally everyone’s experiences with having to explain their epilepsy to other people will be different. Personally, I have found that about 90% of the time I have received responses that I would have rather not had. For a long time I tried not to dwell on it thinking that there wasn’t anything that I could do to change people’s attitudes or feelings. But then I realised that other people’s reactions would change if they were simply more education about epilepsy.

Also, for a huge amount of time, I never knew anyone with epilepsy. I never had anyone to talk to about it, to share my experiences, my fears or my thoughts. For many years I only knew of ‘a guy who knows a guy’ with it and the odd person who had one seizure, which wasn’t exactly helpful. A few years back I was working with a girl who had epilepsy, I approached her one day and I brought up the topic about myself having epilepsy, she looked so relieved to perhaps not be alone, and we spoke for ages on the subject. I then realised that although I might have controlled epilepsy I am still helpful, and I would like to help anyone who needs it.