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 on given prompts.
Friday 17th April: Health Tagline
Give yourself, or your patient experience a tagline. Grab attention with your slogan. Make sure it’s catchy!
To come up with a tagline to encapsulate the patient experience or life with chronic illness is extremely onerous. There are many facets to life with a long-term health condition; some good and some bad. How on earth could we summarise everything that we have to face every day in just one sentence?
If we could turn back the clock and given some medical literature about our condition, what would we want the tagline of the pamphlet to be?
I know after, I was given a diagnosis of a long-standing brain stem lesion, my thoughts were consumed on the long-term aspect of the condition. My thoughts were preoccupied with knowing that my life will never be normal again and that no amount of medications will eliminate the symptoms caused by the neurological condition.
Therefore, I would want to read a slogan that could alleviate the fears of being diagnosed with a long-term condition, as well as providing hope that although life will be forever changed, and certain aspects of our lives might be lost, there are still plenty to look forward to and experiences that we can still take part in, and so on. My slogan would envision hope and positivity despite the unclear outlook for the future. Also, as my neurological condition is rare, and therefore any support for a condition like mine is non-existent, I wanted a slogan that is inclusive; a slogan that encompasses everyone living with a chronic illness, regardless of the diagnosis.
A friend was recently struggling herself due to her own diagnosis, and wanting to do something nice for her, during her time of need, I sent a card and letter. In the letter, I wrote “Rainbows and sunshine can still be found even in the darkest of times“, and so I would choose this as my slogan. I know the tagline does not specifically relate to me, or my patient experience, but it does cover something that we all need at times – and that is hope. Hope for a better tomorrow.
A Slogan of Hope for anyone living with a chronic illness
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
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
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…
Welcome again to another day, and another post for the 30 Days, 30 Posts Challenge for WEGO Health Activist Writer’s Month Challenge – and some of these posts have certainly been a challenge!! I hope you have all enjoyed reading the entries so far, and today’s prompt is another one which really requires a certain degree of reflection:
Learned the hard way…What’s a lesson you learned the hard way? Write about it for 15 minutes today.
There are a great many lessons that someone with a chronic health condition can learn through the journey of being unwell. However, the one I have chosen was inspired by a quote I found on my Pinterest page, and says the following:
There are so many times where I have sat and wondered what my life would be like if I didn’t have the long-standing brain stem lesion and spastic paraparesis. Where I would be in life, and what I would be doing with it? Would I even be living in my own place, away from my parents? So many times, have I dreamt of the life that I so desperately wanted – a good job, my own car and house, good friends to share good times with and so on. And also been many times where I have wanted to be anyone else but myself.
However, as the quote says, dreaming about a life that we don’t have, very often stops us from living a life that is out there waiting for us to grab it with both hands…
Very recently, myself and my parents have referred myself to Social Services. To find out what help there may be to help me live a fuller life – maybe help to get me out of the house more instead of being stuck indoors the majority of the time, to gain a more independent and active social life.
And as I have found out, it looks like I am eligible for help. For instance, there is a scheme called ‘Direct Payments’ where a person is given a grant from the local government in order to employ a personal assistant. On personal circumstances, and the needs of the person themselves, these personal assistants may be for someone to come in to the house and clean, or in order to pursue social activities in the wider community – trips to the local cinema or theatres, using the services of the local leisure centres and so on.
In addition, I may be eligible for an assessment by Occupational Therapists for mobility aids and adaptations to help me around the house and in order to prevent accidents and falls. It may be that I could have a wheelchair to help get outside of the house more, and to prevent falls outside and without the worry of my legs giving way. A wheelchair may be a fantastic idea, as it would give me the opportunity to visit more places, and to visit them for longer as I’m finding that whenever I am going out, it is only for short periods of time due to the weakness in my legs and the fact that I am unable to stand (and therefore walk) for long periods of time.
There are also schemes which take disabled or people are otherwise unable to get out of the house on day trips to places outside of the local community as a means to getting to know others and to help starve the loneliness that they may otherwise face.
Therefore, if my days weren’t spent dreaming of a life other than the one that I have, it may be that I may have looked and found help sooner. I may have thought about the possibility of gaining help from Social Services before it was suggested to us my somebody else if I weren’t wishing away my condition or dreaming about being anybody else other than myself.
If I hadn’t done that I may be living a different kind of life that was waiting for me and just within my grasp – met all different kind of people, made new friends and contacts, and seen different places that I may otherwise not have seen, instead of being stuck inside with no company to speak of…
This is the lesson that I have recently learnt, and learnt the hard way…
