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Lighting the Flame for Invisible Illness

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A friend of mine, a lovely woman whom I connected with through this blog, recently asked me to take part in an awareness campaign to shed light on invisible illnesses and the debilitating effects that they can have on the lives of those affected.

We found each other as we both share a diagnosis of Functional Neurological Disorder (FND).  This is a disorder which is a result of a problem, often of an unknown origin, of the central nervous system whereby the brain fails to send or receive messages correctly. As the brain controls all of our bodily functions, the list of potential symptoms is extensive and no two people with this condition will exhibit the same symptoms.

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Sharing our stories can help break through barriers and shine a light on invisible illness

In many ways, there are many unknowns to this condition, but as I have and continue to experience the symptoms can be wide-ranging and debilitating.  Also in both of our experiences living with such an invisible illness can be difficult and isolating as the effects of such conditions cannot be seen.  As a result, my friend Harmoni Shakti wants to shine a light on these conditions to start new and meaningful conversations between loved ones, friends, colleagues and even strangers.  By doing so, Harmoni hopes that all of us can start to converse, start more meaningful and truthful connections so we can better help each other through the tough times that these illnesses can bring.

Harmoni has therefore asked to help ‘light the flame’ on my own journey of life with a functional neurological disorder and my other neurological conditions to help raise awareness that has already been featured on her social media pages and given me permission to also publish on here my own blog.  Do you live with an invisible illness? Why don’t you also light a flame and share your own story with Harmoni and the rest of the world?  Details to get in touch with Harmoni and all of her social media pages can be found at the bottom of the page.

Imagine growing up never fitting in.

Constantly feeling like you are always on the sidelines.

That’s what life felt like for me growing up.  Experiencing symptoms such as dizziness and weird sensation in the legs which no one else in my peer group seemed to experience.  It set me apart from everyone else. 

Encountering such symptoms and not being able to describe what I was going through sufficiently to the appropriate medical professionals during many appointments over many years.  As a result, I felt incredibly alone and isolated from friends and family. 

It continued for many years, dizziness and pain in my legs following me through secondary school and later university. 

These symptoms and new ones including severe weakness in the legs, often resulting in them giving away on me and me on the ground unable to stand or walk.   Visual disturbances, which I often experienced during childhood and was thought to be related to my short-sightedness were added to the growing list of symptoms that had become my life.  With all of these symptoms, I was and continue to be unable to leave the house unaided because of the symptoms and the effect that it has on my life (i.e., the falls and being unable to get back up, especially as there are no warning signs before it occurs).

And as the symptoms worsened and became constant I felt that I became shackled to them; imprisoned to my home because of persistent and incapacitating symptoms.  Left unable to work or participate in society.

I and my symptoms have stumped all of the doctors and consultants whom I’ve seen over the years; unable to find a name for what I am experiencing.  As a result, I was referred to see a consultant in London.  He concluded after numerous tests and reviewing my extensive medical history that several co-morbid conditions were going on; something that happened at birth or a genetic disorder causing a long-standing neurological condition which resulted in functional symptoms, or a functional neurological condition (FND).

If we think of the brain as a computer, neurological conditions such as MS or Parkinson’s Disease are as a result of a hardware problem (damage to the brain observed by an MRI scan) however often people like me can develop symptoms that have no apparent cause or damage to the brain.  In this instance, there is a software problem in which the brain for some reason fails to send or receive messages correctly.

Functional Neurological Condition, like many others, is invisible.  Living with an invisible illness can be incredibly lonely as no one else can see the pain and other debilitating symptoms.  They think we are just like them and cannot understand the problems that we are experiencing at that particular time.  Others cannot see what we are experiencing which is why we should help shine the light on invisible illnesses and the effects that they can have on the individual.

I am lighting a flame for invisible illness and for those who are affected. 

[Tweet “I am lighting a flame for invisible illness and for those who are affected #lightingtheflame”]

To connect with Harmoni and to help with her mission to shine a light on the effects of invisible illnesses, you can connect with her on her following social media accounts:
Facebook          Twitter          Instagram

You can also share your story by using #lightingtheflame

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Alone in an invisible world…

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This post is for a competition run by an organisation called Labs* by One Squat Shop together with health activist Megan Densmore.  Megan has organised a team of film-makers to make a documentary, called Invisible which highlights and raises awareness of invisible health conditions.  Lindsay Tabas of One Squat Shop has teamed up with Megan and with designer Mat Poirot have produced a limited edition t-shirt which together with the film highlights and makes people aware of the invisible symptoms that people with chronic health conditions suffer but cannot convey to others.  The competition is for one blogger (and one lucky reader) to win a copy of the film and t-shirt (or tank top for women). 

The prompt for the blog post is:

What does the t-shirt design mean to you? How does it make you feel? What does it tell people without invisible illnesses about your experience? How do you hope this will help awareness?

 

The word invisible conveys so many images and messages.  The definition states, that invisible is something that is “not visible, withdrawn from or ought of sight or something that is not perceptible by the eye.”  When I was much younger at secondary school, I thought I knew the meaning of the word as I felt completely invisible to the rest of my peers due to being continually ignored and much time spent on my own due to being ostracised.  However, after living many years with a long-term health condition in which the symptoms that I live with are hidden and cannot be seen by others, I now truly know the meaning of the word.

In many ways, living with an invisible health condition, such as the neurological condition which I live with, is like living inside a bubble of which you are the only one aware of its existence.  You are unable to convey symptoms such as pain, dizziness and fatigue to those closest around you, as they are subjective and is not perceptible to anyone else.  And as those closest to you, as well as society, in general, are not aware of the symptoms that are ruling our lives, those with invisible chronic health conditions are very often met with suspicion and as a result, people can often expect more of us than we are capable of due to ill-health.

As a result, therefore, there needs to be much more awareness of invisible illnesses and the debilitating effect that they can have on the individual living with a chronic illness.  There have been fantastic awareness weeks that have been established on the internet and through social media sites such as Twitter and Facebook, which to some extent have raised the awareness of such conditions.  However, there could be an argument that there needs to be more done to raise awareness of invisible chronic conditions away from the internet and more emphasis for the wider society in general.  In the UK, for example, popular soap operas have been very valuable in raising awareness of a wide variety of subject matter such as HIV, domestic violence as well as raising awareness of medical conditions, many being invisible such as MS and ME as examples.

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This is why this tank top design may be another excellent tool to raise the profile and awareness of such illnesses.  The image above shows the very eye-catching design and for those, without any knowledge of such conditions it may raise important questions in their mind regarding the meaning of the design, and as the wearer of the tank top is asked about the t-shirt, it, therefore, allows a lesson of these prevalent invisible chronic conditions.  For me, the tank top is a great talking point for anyone not touched by invisible illnesses such as lupus, MS or fibromyalgia as examples.   Also, I am sure you would agree the tank top is also very clever with the design including the lungs as it reflects the idea of everyone being able to see inside our bodies, which in reality, of course, they aren’t.  For anyone living with an invisible illness, we often wish that everyone around us were able to see inside our bodies; to see the damage and signs of our conditions that only exist inside of us, and to allow friends and family to visibly see the struggles and pain that are a result of our invisible illness.  This tank top for me is an excellent representation of the unseen and invisible struggles that I carry around with me all the time, just as the lungs that are inside of me.  And for me it does all this without being rude or condescending; it is a fun and fashionable way to raise awareness.  As I live with mobility problems, as well as pain and other symptoms which are constant, these, of course, does not define the person that I am and for me the design perfectly reflects this – our bodies, whether healthy or crippled by illness is a reflection of ourselves, and does not define us as individuals.

I hope that the tank top design will remind individuals to not judge individuals by what they can see on the outside, but be mindful of the person beneath the surface and to be aware of the possible struggles that someone might be living with, which cannot be seen.

Here’s a 5-minute teaser for the film ‘Invisible‘

http://www.youtube.com/watch?v=0QZsXWWtR_c

As ever, would love to hear all of your thoughts regarding the subject of this particular blog post.  What are your thoughts regarding the t-shirt design?

 

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I’m supporting Balance Awareness Week! Will you?

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Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions.  They also aim  raise money for research into these disorders which causes dizziness and affects the balance system.

According to the VEDA website:

The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.

Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life.  Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls.  Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).

One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa.  Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions.  Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition.  To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.

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There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’.  This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication.  The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014’ underneath.  The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.

There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders.  These disorders can affect anyone at anytime and is something that could affect at you at some point.  As Marissa says:

Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence… PLUS you’re getting a cool looking t-shirt!

 

If you aren’t able to get your own t-shirt then please  help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence.  Awareness is a catalyst for a change so help and be a change agent!

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