Alone in an invisible world…

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  The definition states, that invisible is something that is “not visible, withdrawn from or ought of sight or something that is not perceptible by the eye.”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 closes around you, as they are subjective and is not perceptible by anyone else.  And as those closest around 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

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?

 

The one important component to survive a life with an invisible illness…

This post is for Invisible Illness Awareness Week (September 8th – September 15th 2014)

Imagine you are a marathon runner, struggling during the half-way mark.  You are fatigued, suffering from muscle cramps and out of breath.  However you are determined to complete the marathon and cross the finish line.  So, what spurs you onto the finish the marathon despite the pain and fatigue.  I can imagine that one thought would help is the knowledge that the end is in sight and the knowledge that the pain and fatigue will eventually end.

A life with an invisible chronic condition, however is no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

There is no knowledge that pain or fatigue will end when living with a chronic illness (Click to Tweet)

In my opinion, one important component for surviving a life with a chronic illness is hope.

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One important component for surviving a life with a chronic illness is hope (Click to Tweet)

Hope that despite living with debilitating and life-altering symptoms, that we can still lead a normal and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced, many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential in life for every person but perhaps it is more essential for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of the pain, hurt and depression that living with illness can cause.  It is hope that motivates us to push forward and keep living through the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

Hope is what motivates us to push forward and keep living through the difficult times (Click to Tweet)

Before the diagnosis of a chronic illness, hope is linked to the future and the plans and wishes that you have for the future.  However, after the diagnosis, the hope and wishes for the future has suddenly a colossal question mark over them.  The future is uncertain.  Due to the uncertainty of the future, hope is therefore decreased.  How do we maintain hope when the life we had known has suddenly changed?  How do we maintain hope when due to illness we experience more bad days than good?

The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.  Ergo, we can choose to be negative and resentful towards our situation.  Or we can choose hope and positivity.

For example, I often used to focus on all the ways that my neurological condition limited my life.  Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.  This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.  Now, I try and focus on everything that I am still able to do, and especially those that gives me joy and happiness.  It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.  Everyone reading this that like me is living with a chronic illness still has something to offer and has lots that they are still able to do despite there being things that they can no longer to do.

Illness is hard, there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.  But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.  Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.  These little pleasures does not have to be expensive or grandiose, but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.  Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive a life with chronic illness.  Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.  Letting illness consume our lives, such as focusing on the limitations that it places upon us can therefore lead us to lose our identity to our chronic invisible illness. As the spiritual teacher Eckhart Tolle said “As long as you make an identity for yourself our of pain, you cannot be free of it.”  By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

By choosing hope we can be productive and enjoy the pleasures that heal us and free us from pain (Click to Tweet)

Becoming Visible in an Invisible World…

 

Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair

Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

Don’t judge others for you do not know their story…

On Wednesday at the ‘Life 4 Living‘ group that I attend, we had a very interesting seminar on Diversity.  In the seminar we were split into two groups and given a laminated sheet with a picture of an island, and a deck of cards with pictures of a diverse group of people, with only their occupation listed on the cards.  We were then told that a ship carrying the people on the cards was in an accident, which resulted in the ship sinking and the people being stranded in the middle of the ocean.  Each group had a lifeboat – however, on the lifeboat there were only spaces for 10 people, and hence we had to decide who of those people to save and whom to leave in the water.

This was obviously very difficult as the only basis we had to make our decisions is what they looked like and their occupations.  During our discussions we decided to save a doctor and nurse, to treat those with medical injuries, a carpenter to help build shelter from the bad weather, and gardener’s to help grow crops and nutrients whilst being stuck on the deserted island.

However, we soon learnt that the doctor who we chose to rescue was in fact a doctor of music and not a medical doctor.  And the nurse, was a veterinarian and so would not be very useful in treating human patients!  And the people whom we rejected, for example, the biker as we thought he looked like he would cause trouble, would in fact be extremely useful in an emergency situation as he was a surgeon.

This exercise, however, taught us how we often make judgements based on very little information causing us to make snap decisions on the type of person we are busy scrutinising.  We are too busy scrutinising others; determining the type of person we believe them to be instead of seeking out the person’s story.

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Many of you spoonies reading this will surely understand this; particularly those with invisible illnesses as we are often victim of others’ judgements.  For example, once I went out, and forgot my crutch.  Due to the problems with my balance, I was all over the place, and as a result, a woman came up to me and accused me of being drunk.  I have heard many other stories, of spoonies whom have been victims of incorrect assumptions made by others – people who have been accused of misusing a disability badge, because there were no outward signs of illness or disability, and thus were labelled as being healthy, and in no need of using a disability parking bay.  There are endless examples of these types of anecdotes that have been shared by spoonies everywhere.  I am sure everyone reading can think of at least one example from their personal experience.  Please feel free to share your experiences in the comment section below.

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So, the game that we played at Life 4 Living, and through the experience of living with an invisible illness, has taught me to not make assumptions about people, without getting to know them first.  To not assume that a person has no wounds, or illness because there are no scars; no signs of illness or disability as not all wounds, illnesses or disabilities are visible, many are hidden as if keeping a secret from the outside world.  And as the quote above also tells us, we also shouldn’t judge so quickly or harshly as we may find ourselves walking in that person’s shoes.

Perhaps if we weren’t so quick to judge in the exercise at Life 4 Living then we may have chosen the people that would have been useful whilst being deserted on that island, instead of those we chose based on our preconceived ideas regarding their abilities and resources that they would bring.

 

This is a lesson that we all must learn….

HAWMC 2013 Day 24: Pinterest Board

 

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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:

Create a Pinterest board for your health focus.  Pin 3 things.  Share the image

Invisible Illness Panel: Journey to Diagnosis with an Invisible Illness

Hello to all my readers

I would like to take this opportunity to thank Christine Miserandino (@bydls) of ‘But You Don’t Look Sick‘ and WEGO Health for inviting me to take part in the Health Activist Roundtable yesterday as well as the other participants: Michele (@lifeaftertrauma), Andrea (@thegreatbowelmovement) and Amy (@abeeliever).

Unfortunately, there were some technical difficulties on my end which prevented me from fully participating so thought I would take an opportunity to discuss my thoughts on some of the issues that were discussed.

Topic 1: How did it feel to have symptoms but no succinct diagnosis? 

As with most people, I think that frustration is the first emotion that people feel when experiencing symptoms without an accurate diagnosis.  My frustration seemed to stem from the lack of understanding from the doctors, a lot of what is written regarding dizziness seems to be directed towards senior citizens, so when I presented with dizziness at the age of 8 many doctors were simply stumped.

Frustration is certainly a key word in terms of invisible illness – frustration as the problems and all what is associated with it cannot be seen so is often met with scepticism from medical professionals, as if we are faking and just want some attention.  Frustration as often with many illnesses, test after test comes back clear, and no cause can  be found and so that cycle continues time and time again, with a definitive diagnosis taking months and sometimes years to come to fruition.

Then instead of doing full investigations on what may be the cause, I was stuck with the label of ‘anxiety’, stating that the anxiety was simply psychosomatic – the easy diagnosis, the one doctors seem to use when they are truly stumped and  haven’t a clue what was going on or are too lazy to carry out full investigations or even write referrals.  Another emotion is loneliness and isolation – all caused by the lack of knowledge or understanding of what is going on inside of me, and having no one around who is going through the exact same experiences as myself.  This all started when I was 8, when the internet was still in its infancy and was something that I did not have access to, and social media certainly did not exist.  If only it happened when I was older and had access to the internet and social media sites, then I may not have felt that loneliness and isolation.  I just felt so different from my friends and peers from school, something was happening to me, something which isn’t visible, and so was not really understood by anyone.

Interestingly, in terms of the problems with the legs and the symptoms of the heaviness and stiffness associated with the spastic paraparesis, I only found out about them after the diagnosis.  As the cause happened at birth, I have always experienced these problems with my legs, so thought they were normal as I hadn’t known any different.  So, is important to remember that every little experience inside of your body that feels different or normal should be noted and talked about with the doctor – after all it could hold the key to getting that final diagnosis…

Topic 2: How did you navigate the health system during your quest for a diagnosis?

This is an interesting topic in terms of the UK Health System, as obviously it is extremely different to that of the US Health System.  As in the UK we have a National Health System, so we do not pay to go and see medical professionals or even for treatment after receiving a diagnosis.

This obviously provides challenges in itself, such as long waiting times to see specialists and consultants, especially within certain specialities such as neurology.  So, often GP’s will only send referrals when it is really needed.

And as I was labelled with a ‘psychosomatic related condition’ then doctors became very sceptical regarding any symptoms that I was experiencing, linking them all to the anxiety disorder and depression that was diagnosed. Once you are stuck with a certain label it is certainly very difficult to get rid of that particular label, and instead of investigating the problems, I was referred to psychologists, psychiatrists, occupational therapists and other mental health professionals – they didn’t seem to want to believe me when I said the anxiety problems that I was experiencing all started after the dizziness, and the panic attacks that I eventually had started after the dizziness had come on.  I became dizzy and then I started panicking, instead of the other way around.

Deep down, I had always known or at least suspected that there was something wrong, that there was an problems inside of me that was the cause of all these symptoms, and it wasn’t until I left university and grown up somewhat, I became advocating for myself and pushed for being referred to consultants and specialists as I just wanted to find out what was wrong or at least put my mind at ease that it wasn’t anything serious.

Advocacy is an important part of the journey towards diagnosis, you really need to learn to stand up for yourself with doctors and other medical professionals!  Trust me,  if you stay quiet and meek as I often was you may never find out those all important questions!

Topic 3: Did the internet or social media help you in finding your diagnosis?

As I said before, when all of the symptoms started I was very young, and the internet was still in its infancy and as I had no real access to it as we didn’t have it at home.  Once I got a bit older, I admit I did ‘google’ the symptoms I was experiencing.  This was when I found that much of what is written about dizziness and balance related problems, will often regard it as something which affects the senior population, and could not find any information regarding these problems within my particular age group.

No, the internet and social media really didn’t help through the particular diagnosis stage, but has really helped me since then.  The support I have found since then has been incredible and have been lucky to have found life-long friends from various support groups as well as people I have met through Twitter, Facebook and of course, WEGO Health!

Topic 4: have you turned to the internet with symptoms or how your symptoms relate to your diagnosis and what goes with it?

Before the diagnosis, I had to really stop myself from constantly ‘googling’ my particular symptoms as it can be extremely frightening, especially when all the worst-case scenarios are presented on the screen.  As often what happens with new medical students you will convince yourself that you have something terribly wrong with you!

However, since the diagnosis I have done some research on the brain stem and much on neurology, and have found that damage to certain areas of the brain stem certainly explains the symptoms I have experienced and continue to experience.  Looks like the doctors were finally right!

Topic 5: How did you feel to finally get your diagnosis? 

I found it to be a very bittersweet experience, on the one hand I was so relieved to have the diagnosis – I finally got the validation from the doctors, that all what I have been experiencing wasn’t in my head after all, and instead was caused by damage to an area of the brain.  However, it was also quite upsetting as the consultant informed me that there wasn’t anything that can be done to treat or cure the condition, only certain medications that could attempt to control the severity of the symptoms, which unfortunately I have found not to be effective and continue to be severely affected by certain symptoms.  The consultant further informed that the symptoms and the lesion to the brain stem seems to be stable and there should be no further deterioration in symptoms.  unfortunately this hasn’t been the case as certain symptoms have deteriorated, some quite markedly where I am the point of being assessed for a wheelchair due to the weakness in the legs.

Another point to note is that doctors do not know everything; even these top consultants!

Topic 6: How did the diagnosis change the way you thought of your health and body, etc?

As I said before, I finally felt validated and relieved that there was an explanation of my symptoms.  Now that I finally knew after years of searching and endless doctors appointments and hospital visits I could finally live instead of merely existing within my body and my life in general.

Topic 7: How did your diagnosis change the way others thought about you and your health?

I’m not sure as I haven’t really discussed it with anyone but I now notice that nobody really says things like they used to.  Things like “You should get out more”, “You need to push yourself to be able to do things” and so on.  They have now come to realise that the symptoms were not imagined or psychosomatic, and there was a physical reason for them.  It’s like they think no longer think that I am to blame for what has happened to be and how I am – it’s like they now think I have a valid excuse to be how I am.

Topic 8: Do you have any tips for those currently searching for a diagnosis; now that we are over that bridge what would you tell someone still on the other side?

I would advise someone still looking for that validation  and important diagnosis to not to give up, and to not be afraid to challenge doctors or to ask questions.  We all need to speak up and to advocate for ourselves – if my parents and I didn’t then I may still be where I was 2 years ago; without answers, validation or that diagnosis.

 

Thank you, and thanks again to everyone at WEGO Health and to Christine for being a wonderful hostess!

Am Taking Part in an Invisible Illness Panel!

Hello Everyone

I just wanted to let you all know that tomorrow at 12.00 p.m. EDT (4.00 p.m. GMT) I will be taking part in an Invisible Illness Panel with WEGO Health and Christine Miserandino from ‘But You Don’t Look Sick’ who is very influential within the Invisible Illness Community, the author of the wonderful and relevant ‘Spoon Theory‘ and whom coined the phrase ‘spoonies’ for all those living and dealing with invisible chronic illness.  The topic will be the Journey to Diagnosis with an Invisible Illness.

You can join in the conversation by going to the tweetchat tomorrow, where there will also be a link to the online meeting room:

http://tweetchat.com/room/haroundtable

Wish me luck!!