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The representation of chronic illness on TV…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

TV Matchup…Think of a TV show that compares to your life?  What is it?  Who would you be, who would your friends and family be?

In my opinion, this particular prompt is definitely the hardest.  I have spent all of yesterday, thinking of various television programmes and considering how it may compare to my life.  However, I really could not think of one.  I live with a neurological condition which is both unusual and rare.  I live with numerous symptoms, which are not typical of everyday life.  Unfortunately, there are not many television dramas that have characters with a neurological condition; there have been on various procedural dramas such as Grey’s Anatomy or House as examples but no long-standing characters from a television show that I can think of.  Furthermore, it could also be argued that as many portrayals of chronic illness are on medical shows set within a hospital environment is also in itself not representative of chronic illness as a whole, especially considering neurological conditions such as mine, which often does not require hospitalisations.

But then I thought about chronic illness in general.  It is my opinion that chronic illness is not well represented in television dramas generally.  Perhaps it is the programmes that I particularly watch, but in my experience the reality of living with a chronic illness is not represented accurately on television drama shows.  During the time when illness or injuries that could result in permanent disabilities these storylines are very short-lived; very often the person is diagnosed with the condition, starts treatment such as medication or physiotherapy and the character recovers, and the condition or injury is never mentioned again.  Alternatively, the character may even die from the condition.

 All of us living with chronic illness, are very much aware that this is not a true representation of what is to live with chronic illness.  Television dramas in terms of their portrayal of chronic illness suggests that chronic illness is not severe, or that its symptoms and its effects are short-lived.  However, the reality as we know is a lot different.  Does this media portrayal of chronic illness reinforce the stigma and disbelief towards those with chronic conditions?  Or perhaps, it is to show that those who live with chronic illness can still lead a normal life?

Susan Kennedy a regular on the television soap opera Neighbours who has been battling MS
Susan Kennedy a regular on the television soap opera Neighbours who has been battling MS

I remember watching ‘Neighbours‘ several years ago when one of its main characters Susan Kennedy, was exhibiting several neurological symptoms; many of which I experience or have experienced in the past.  For example, visual disturbances, dizziness, numbness in the limbs and extreme fatigue.  Susan was eventually diagnosed with multiple sclerosis; and in my opinion at the time this particular storyline was monumental in the increasing the public awareness and understanding of multiple sclerosis.  I cannot remember the exact length of the storyline in which she battled with multiple sclerosis, but unfortunately in my opinion there has not been an adequate continuation of the storyline. Although she has been seen suffering a recent relapse with her condition, her multiple sclerosis is seldom mentioned or its symptoms never seen affecting her life.  It seems that television dramas and particularly soap operas are unable to sustain a long storyline portraying life with chronic illness.

Cherylee Houston as Izzy Armstrong - the first disabled actress on the famous cobbles
Cherylee Houston as Izzy Armstrong – the first disabled actress on the famous cobbles

The British soap opera Coronation Street also introduced a main character, who also happens to be disabled and exhibiting an invisible chronic condition called Ehlers-Danlos Syndrome (EDS).  EDS are a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen.  The collagen in connective tissue helps tissue resist deformation, and generally collagen is an important factor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs.  Abnormal collagen therefore renders these structures more elastic and can lead to easy and excessive bruising, joint hypermobility (looser joints) and weakness of tissue to name but a few.  The actress who plays Izzy Armstrong, Cherylee Houston has the condition herself, and therefore the soap was praised for not only hiring their first disabled actress but also for raising awareness of this rare condition.  However, other sufferers have raised concerns of not adequately portraying the fatigue and pain that very often accompanies the condition.  Critics also state that the public profile of ehlers-danlos syndrome has not successfully raised the awareness of the condition as many people still reporting that they have not heard of the condition.  Is this another example for television dramas failing to follow-through in their portrayal of chronic illness?

Really think about the question: In which television series can you think of, in which one of the main characters is living with a chronic illness and it is accurately portrayed and is a continuing storyline within the show?

The answer is probably none.  Well, from none of the television dramas that I am familiar with anyhow.  Having chronic illness or disability in a soap opera such as Neighbours or Coronation Street can be argued is important in highlighting and raising awareness of a particular illness, however in my opinion it would be more beneficial to feature in weekly dramas as soap operas are an ensemble and features many storylines within each episode; many of which could become overlooked by the audience.  Characters are seen in the forefront of the drama for several weeks during their big storylines, but fade back into the background after the conclusion of the storyline to make room for the next big and exciting storyline.

I think that is why I have failed to find a television show that reflects my life.  Although my diagnosis does not define me it is however a large part of my life and a television show which compares to my life should therefore also reflect this part of my life.  Perhaps a new television show would need to be created to reflect my life with a neurological condition.

I did remember whilst in the middle of writing this prompt about comments others made during the period in which the doctors’ were still trying to find a diagnosis.  The doctors were puzzled regarding my symptoms and could not find a cause; as a result my friends would joke that I needed to go on House as he was a diagnostic genius!  Perhaps that is the show that I need to compare to my experience with a chronic illness; it certainly would have saved a lot of time trying to get a definitive diagnosis.  Maybe this could be a large project for the spoonie community as a whole – to pen a true and accurate portrayal of chronic illness for a television drama.  To raise awareness of such conditions and the effects that it has on our lives – perhaps with chronically ill people themselves penning such dramas, the public would gain a better understanding of those with such conditions and perhaps then there would be a more sympathetic approach towards individuals with chronic illness.

So, can you think of any television dramas that has a long-standing character with either a neurological condition, or any other chronic illness?  What if your life was a television drama; which television show would compare to your life?  As ever would love to hear your suggestions and thoughts!  Feel free to add your comments below…

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What’s in a name?

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

“Health Tagline”…Give yourself, your blog, or your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Again this is a prompt that has been involved in the Health Activist Writer’s Month Challenge during a previous year; so again I thought I would do the prompt a little differently than described.

What is in a name?  Not only is it a very famous quote from Shakespeare’s ‘Romeo and Juliet’ but it  also has a significant value in everyday life; every person recognises themselves by their name.  A name gives an identity  and meaning whether it be a person, a book, or even a blog.  A names enables us to be able to identify a person or an object, as well as being able to differentiate one thing from another.  A name is powerful tool in language.

So to choose a blog name is important; it not only gives the blog its own identity but also gives the writer a voice.  A name gives the audience an understanding of the subject matter of the blog, even before they start to read. So, what made me choose the name ‘My Brain Lesion and Me’?  For starters, I thought the name was reminiscent of a book; of a story and in my opinion that is exactly what the blog is about – it is a story of my life and experiences with living with a neurological condition.

In a previous year, I had decided to come up with the tagline ‘Once upon a Dizzy Spell…A story of a girl living with a neurological condition’.  What made me choose this particular tagline is because as a young girl I loved fairy tales, especially the classic tales of princesses and princes.  I was an avid viewer of Disney films such as ‘Beauty and the Beast’ and ‘The Little Mermaid’ and loved the romantic stories and the promise of a happily ever after.  Another reason for the chosen tagline is that my life living with a neurological condition all started with that very first dizzy spell all those years ago.  And that dizzy spell was the beginning of the journey to where I am now…

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And what if I were to give myself a tagline, what would I choose to give myself?  I was thinking long and hard and decided in the end for:

Stumbling along the silver lining

I decided upon this particular tagline, as for starters my legs have been particularly bad recently, and often due to the trembling, walking becomes a lot more like stumbling!  Furthermore, I would like to think that I am a positive person despite my neurological condition.  For example, I keep a positivity board and scatter various items adorned with positive quotes as an attempt to look for the silver linings in life, as hard and difficult as living with a chronic illness can be, and so the above tagline for myself was born!,

If you had to create a tagline for yourself, what would yours be?  As ever would love to hear your thoughts and suggestions so please feel free to add your comments below…

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Clichés often heard when dealing with chronic illness…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Well, that’s just crazy!…What’s the most ridiculous thing you’ve heard about your health condition?  Was there any context?  What did you think at the time you heard it – and what do you think of it now?

This prompt has actually been used a couple of times previously and so therefore I have decided to come at the prompt at a different angle.

When someone is living with a chronic illness, everyone seems to have an opinion.  People will give advice on how to live and deal with said illness, advice on treatments and so forth.  As well-meaning as that they may be, they are often extremely unhelpful.  Therefore, this blog post will look at the more popular clichés that we chronically ill often hear:

  1. “Well, it could be worse..” or “There are people much worse off…” – I think that everyone living with a chronic illness realises this; and as much as the statement is true, it however still does not help us feel any better regarding our own situation.  The statement only really adds to the feelings of loneliness and isolation that already exists in our lives as a result of chronic illness.  In addition, feelings of  suffering and pain are entirely subjective, and therefore you cannot measure one person’s pain against another.  We are still going to be in pain, and the thought of someone else being worse off is not a comfort to us.
  2. “You need to get out more; that will make you feel better…” – This is another cliché that can be especially infuriating to hear when you are chronically ill.  Especially as there is nothing that we would like more, than to be able to get out of the house and do everything that we enjoy such as shopping or socialising with friends as examples. However, we often feel too unwell to go out; and unfortunately there isn’t anything we can do about it.  Stating that we need to get out more just makes us feel worse and more depressed than usual.  So, please refrain from using such expressions.
  3. “Get well soon!” – As much as I realise that this popular expression is often used with the best intentions, it is especially hurtful for people like me living with a chronic health condition.  As the term ‘chronic’ suggests our condition is not going to improve; and that these conditions are ones which we will have to live with for the rest of our lives. It makes us feel misunderstood.  As much as this is a lovely phrase to use for someone with the flu or a broken leg for example, it just leaves us with the thought of “If only!”.
  4. “But you look so GOOD!…” – This has to be the most popular cliché that us spoonies hear from others.  It’s as if people cannot fathom that we are so unwell when we look so normal.  However, it is said that approximately 96 per cent of all chronic health conditions are invisible.  This suggests that the healthy population believe that a sick person should look a certain way and when we fail in living up to that expectation that they therefore do not believe we are sick.  This phrase therefore can be particularly hurtful.
  5. “Have you tried exercise?  That can be very beneficial for illnesses…” – Yes, I understand that exercise can be beneficial for a number of different conditions; for example, mild depression can be alleviated by taking part in some form of exercise as ‘endorphins’, the happy chemical is released during exercise.  However, with many chronic health conditions, it can be very difficult to undertake any form of exercise because of severe symptoms, such as fatigue.  In my case, for example, not only fatigue that can stop me from doing some form of exercise but also the dizziness and the trembling in the legs can make it very difficult to exercise also.
  6. “My friend’s aunt’s cousin has that.  She tried _____ and it really worked for her. Maybe you should try it?” – As well-intentioned telling us other people’s experiences and although you are trying to help us in trying to find something to help, it is important to note that with a number of different chronic conditions and particularly neurological conditions, every person are unique and each case can be very different.  What works for one person will not work for somebody else.
  7. “I know exactly how you feel.  I often feel like that…” – This is fine to hear from other friends who are also battling with chronic illnesses. however, it can be very hurtful and frustrating when other friends begin to compare their recent bout of flu or bad cold to your chronic health condition.  Being in pain and tired for a week is not the same as battling these symptoms for years.  So, please do not tell us that you know how we feel when you have not lived with or experienced chronic illness for yourself.
  8. “I wish I could stay at home all day…” – I find this particular statement very hurtful indeed.  We did not choose to be ill, and trust me when I say we would much rather be out living life, and working like you instead of being stuck at home all day feeling very unwell and tired.
  9. “Are you sure, it’s not just in your head?” – Again, this is a really difficult and hurtful statement to hear when experiencing chronic illness.  When doctors are unable to find an explanation for symptoms, it is automatically assumed that the person must be imagining, exaggerating or even faking symptoms to gain attention.  We get asked this by doctors a lot of the time, so please as friends or family members refrain from suggesting that the problem is simply all in the mind.
  10. “It can’t be that bad?” – The thing with chronic illness, is that it is an experience that you cannot possibly imagine, unless you have had personal experience with it, so again a statement like this can be very upsetting as it trivialises our whole medical condition.  Like the statement above it also suggests that we are making the condition up, and can often make us feel that our own friend or close family member does not believe us, which can add to the feeling of loneliness, isolation and depression that can often be associated with chronic illness, even if it was said with the best intentions.

The best thing you can do for someone with a chronic illness is just to listen to them.  Ask if there are anyways in which you can help them.  Be a supportive friend or family member.  We would really appreciate that more than hearing statements such as those above.

So, these are the few clichés that I have heard during my experience with chronic illness.  What are the some of the statements that you have heard from friends and family?  How did they make you feel?

As ever would love to hear your thoughts and comments.  Please feel free to add your comments below…

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There are a few of my favourite things…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

“These are a few of my favourite things”…It may not be brown paper packages wrapped up in string or warm woollen mittens, but what are some of the things you love?  What couldn’t you live without?

I have a lot of things in my life which I love – my friends, family and my pet dog Honey are at the top of that list but as I have written about them numerous times already, I have decided to concentrate on the things that I love which provide me with comfort on the bad days and helps me to stay positive.

So what is in my own personal ‘Comfort Box‘?

First of all is a pair of comfortable pyjamas.  I have a pair in which the bottoms are chequered and a simple pain black top.  It is great to have a comfortable pair of clothing to keep near the bed, as whenever I am stuck in bed due to my condition I still am able to change into something clean as an alternative to staying in the pair of pyjamas that you have had on all night!  It is also convenient for those days in which you have no energy to be able to pick out an outfit and are planning to stay at home anyway.  The pyjamas that I have kept for those many bad days, look more like lounge wear than conventional pyjamas so is less embarrassing if the postman knocks on the door to sign for a parcel!

Another favourite of mine to keep next to my bed is definitely my iPad.  When stuck in bed, it can be extremely monotonous and dull.  Therefore, I love my iPad as it keeps me entertained with a variety of different apps to use to suit my mood.  For instance, there is the Kindle app for when I fancy to lose myself in a book, or even Netflix when spoons are nonexistent that all I have the energy for is to watch a television programme or film that requires little thought involved to enjoy, or sometimes watching videos of cute and adorable dogs on YouTube to cheer myself up when stormy clouds appear, blocking all sunshine and positivity in my life.  I am even able to stream the many number of films and television programmes that I own from iTunes which can keep me entertained for hours.  Then there a number of games that I have downloaded to the tablet computer; a great distraction from pain and dizziness that seems to plague my life so much.  In my opinion, tablet computers are a must-have gadget for spoonies – it is easy and light to carry and can easily be used in bed, and the features that are available on tablets such as the iPad mean that you never have to be bored whilst stuck in bed again!

One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate. These not only brighten my bedroom but also puts a smile on my face
One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate. These not only brighten my bedroom but also puts a smile on my face

Above my bed, I have just placed some butterfly LED lights, which is now another one of my favourite things.  As many of you know, I love butterflies and have many accessories and pieces of clothing which has butterflies all over them.  When I saw these in a local shop, I thought they would make a lovely addition to my butterfly themed sanctuary.  Not only do they brighten my room and provide light, for when I am awake with painsomnia (for explanation of term see my series of the ‘A to Z of Chronic Illness‘) but they just put a smile on my face when recuperating in my quiet, relaxing space at home.

Some of my favourite letters and cards :)
Some of my favourite letters and cards 🙂

I treasure all of the cards and mail that I have received from numerous friends.  Their beautiful words and lovely sentiments never fail to bring a smile to my face and cheer me up when feeling low.  These are perfect to read again and again, especially when suffering a relapse or flare in your condition.  Letters from friends, or relatives remind you that you are not alone and that there are people who care when it can often feel that you are alone.  One of my favourite letters is one I received from the extraordinary  young woman ,Jodi Ann Bickley, who after suffering from ill-health herself established ‘One Million Lovely Letters‘; a project in which she writes letters to those who need a lift, whether it be because of illness, a breakup or bereavement.  The letter is gorgeous; with beautiful meaningful words and complete with glitter and sparkle.  The letter means so much as it is a reminder that I am so much more than my condition, and how I am not alone in the fight against my condition.  It is a perfect antidote to a bad day due to my neurological condition.

Some goodies from 'The Itty Bitty Book Company'
Some goodies from ‘The Itty Bitty Book Company’

Another item that brings me comfort is the little items that I have bought from the wonderfully positive company ‘The Itty Bitty Book Company‘.  This small and ethical company promotes positivity through using inspirational and motivational quotes in little books, prints, cards and even badges.  The quotes are all ones which I love and find helpful during times of struggle; I often take them to hospital appointments to help give me strength and positivity.  The designs are also truly beautiful and the bright colours makes me instantly smile.

Positivity Board -full of hope and inspiration
Positivity Board –  full of hope and inspiration

Another favourite thing of mine, is actually something that I created and that is my positivity board.  It has everything that inspires me and keeps me positive despite chronic illness – letters from friends as well as cards that I have bought with inspirational and positive quotes on such as “Life isn’t about waiting for storm to pass but learning to dance in the rain” and “Everyone wants happiness, nobody wants pain, but if you want a rainbow you need a little rain”.  It is these quotes and the idea of the positivity board which really helps in keeping me inspired and positive despite all the trials and tribulations that comes with the symptoms associated with my neurological condition.  Recently, I have found some ceramic shapes that also has lovely and positive quotes on them and as I have not go much space in my bedroom to hang them, I have therefore decided to place them in my comfort box and get them out when I am having a rough day because of how I am feeling or stuck in bed due to the weakness in legs.  These items are a great reminder that no matter how life may be tough in the present, there are still many more good moments to come; they inspire and uplift me when life with chronic illness becomes too hard to bear.  They help me remain a positive person and that are why they are part of my favourite things and carefully placed in my comfort box.

Some inspirational quotes
Some inspirational quotes
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I went and I conquered!

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

Health Activist Choice Day 1…Write about what whatever you want today!

I thought long and hard about what I wanted to write about for today’s post.  As we all know living with chronic illness is like riding a rollercoaster with a number of highs and lows; and unfortunately many of these are lows.  However as much as I struggle living with my neurological condition, I try my best to remain positive despite it, and so therefore I would like to write about an achievement that I have finally managed to accomplish.  As most of you may know, due to my neurological condition (a long-standing brain stem lesion) one of the main symptoms that accompany the said condition is severe and constant dizziness.

The dizziness, as we have found out is triggered by certain visual stimuli, such as large stores with its open spaces, high ceilings and fluorescent lighting.  This therefore, restricts me into where I am able to shop,  for example the clothing store Next, which also happens to be my favourite clothing store.  A few years ago, a Next opened up in a local retail store near to where I live, however, I was unable to shop in there because the store itself would trigger the dizziness and vertigo, and as a result make me feel very unwell.  When my carer started working for me, approximately fifteen months ago, we made one of my goals to be able to go into the store that was one of my favourite retailers.  Over the months we have tried and tried to no avail; sometimes we got as far as the door but the dizziness became so intense that we had to go straight back to the car.

However, last Thursday on a whim I decided that we should give it another try. As we are due to go on holiday soon, I still need some new clothes to take away with me and seen some clothes that I liked whilst browsing their website.  I have to admit, I love browsing their website and their delivery options are fantastic, for example you are able to order certain products by 9 PM and have them delivered the very next day.  However, there is a delivery charge, and when you order as much as I have done over the years, it really adds up.

I did it! I managed to go into store, and what’s even more is that I managed to shop and browse their lovely clothing and accessories for nearly an hour! And even managed to buy a couple of items!  I cannot describe the sense of accomplishment that I felt when I paid for my items! I actually did it! I defeated the dizziness and vertigo; pushed through and won.  I admit, there were a couple of moments that I nearly collapsed, and even went back to the car at one stage; and apparently at one point I even went green when the dizziness became so severe it made me feel very sick.  The trembling in my legs was also quite severe, but I took along my wheelchair which made it much easier; and even when I was just pushing the wheelchair it have me a sense of stability, and at least I didn’t have to contend with the worry of my legs collapsing beneath me.

I really have to thank the entire staff of Next at the Talbot Green Retail Store, who really made the experience much easier and were very helpful towards me and my situation.  One staff member noticed how unsteady I looked and offered to open up one of the cash registers to save me from queueing.  And the members of staff who diligently looked for items that I was looking for; going up to the stockroom to show me some of the options that were in stock.  It is fantastic customer service that really helps when suffering from a chronic illness or disability and more than makes us more likely to return.

So, I managed to conquer a very debilitating symptom and managed to physically shop in a store which I love.  Now, I have done it once, I look forward to many more visits to Next…

I hope you have enjoyed the new blog post!  Have you conquered any fears or battled through severe and debilitating symptoms to accomplish something that you have wanted to for so long? As ever I would love to hear your comments and stories of triumph over our symptoms and conditions!!  Feel free to share below in the comment section…

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