Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame πŸ”₯

So how do I define invisible illness; I could say it’s an illness or disability that is hidden or not apparent, but that doesn’t even begin to define what some of these illnesses really are, or how they impact the many millions that live with them everyday. You see, some people with sight or hearing disabilities may not wear glasses or hearing aids, BUT they are invisibly disabled.  Someone that may have to sit day in, day out because they have chronic back or joint problems sitting, can be categorised as having a invisible impairment. Invisible disability/ illness creates so many challenges for the people that live with them. There are so many more examples that I could give to define a invisible disability. The reality of invisible illness or disability, is that they can be so difficult for others to recognise or acknowledge. This makes it  difficult to understand the cause of the problem or problems, because they can’t see evidence of it in a visible way. So these invisible conditions have been captured under an umbrella term that captures the whole spectrum of hidden disabilities, known as ‘invisible illnesses’. Having so many illnesses and conditions under the one umbrella, means it is so hard to decipher and diagnose what is actually happening to a person that presents with unseen symptoms.


People with invisible illnesses can find it difficult to  make others understand how their  symptoms of such things as extreme fatigue, dizziness, pain, can be so debilitating.  This misunderstanding, will in many cases be met with hostility, judgement and stigma by the bigger community and world.

People living with invisible illnesses and chronic pain are often accused of faking or imagining their disabilities. These symptoms are real, they can occur due to bouts of chronic illness, chronic pain, injury, birth disorders, they can even just come out of the blue and most importantly are not always obvious to the onlooker.

 Many millions of people around the world, have a medical condition which could be considered a type of invisible illness or disability. Let me explain it this way, there are many that have a chronic medical condition of one kind or another, some of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act healthy. So I’ve explained one side of illness invisibility, this is the other side, the side that causes and increases what can be debilitating physical or mental impairment that can lessen one or more major life activity.  

It saddens me that when somebody sees a person in a wheelchair, wearing a hearing aid, or carrying a white cane, it tells us a person is impaired in some way. But for people living with invisible illness and/or disability living is a bit more difficult for many people in the world to acknowledge. 

Invisible illness and disability can and do significantly impair normal activities of daily living.
Examples of Invisible illness Disability vary, here are just a few;

  • Chronic Pain can be the cause from a variety of conditions. A few reasons for chronic pain may be because of back problems, bone disease, physical injuries, and many more reasons. Chronic pain may not be clear to people who do not understand the specific medical condition.
  • Chronic Fatigue is a type of disability that refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life. It is totally invisible to the greater community.
  • Mental Illness is a term for many illnesses of the mind. Examples are depression, attention deficit disorder, schizophrenia, agoraphobia, bipolar and the list goes on. These illnesses can also be completely debilitating to the person suffering and can make performing everyday tasks extremely difficult, if not impossible.
  • Chronic Dizziness is often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.

I hope you are beginning to see that being invisibly ill, effects many areas of health which effects many areas of life. Many people living with a hidden physical or mental challenge are still able to be active in their hobbies, work and even be active in sports, but their are others that struggle just to get through their day and cannot work at all. 

I want us all to be able to come together in understanding the true level of invisible illness and disability. Because, when we do we will truly begin to see awareness and support bringing better research and thus treatments. 

I will finish today with a list of invisible illnesses that I’ve been creating to show the world just how wide the umbrella is…….but even I may have forgotten some. If I have, please let me know and I will add your illness/disability to the list;

INVISIBLE ILLNESSES 

ADHD

Anxiety disorders

Allergies

Arachnoiditis

Asperger Syndrome

Asthma

Autism

Bipolar disorder

Brain injuries

Chronic fatigue syndrome

Chronic pain

Chromosome Duplication

Chromosome Triplication

Coeliac Disease

Conversion Disorder 

Crohn’s disease

Depression

Diabetes

Ehlers Danlos Syndrome

Endometreosis

Epilepsy

Fibromyalgia

Food allergies

Fructose malabsorption

Functional Neurological Disorder 

Hypoglycemia

Inflammatory bowel disease

Interstitial cystitis

Irritable Bowel Syndrome

Lactose Intolerance

Lupus

Lyme Disease

Major depression

Metabolic syndrome

Migraines

Multiple Sclerosis

Multiple Chemical Sensitivity

Myasthenia Gravis

Narcolepsy

Personality disorders

Primary immunodeficiency

Psychiatric disabilities

Reflex Sympathetic Dystrophy

Repetitive stress injuries

Rheumatoid arthritis

Sarcoidosis 

Schnitzler’s Syndrome

Schizophrenia

Scleroderma

Seizures 

Sjogren’s syndrome

Transverse Myelitis

Ulcerative Colitis

Invisible illness and/or disability creates challenges for the people who have them. I’ve said it before and I will say it again and again, the reality of these conditions can be difficult for others to recognise or acknowledge. You may not even understand the cause of the problems, because you cannot see evidence of it in a visible way. So, I say to you – YES, YOU out there in the big wide world, if you can’t see something, how can you judge it! Let’s begin walking together supporting those that are impacted by the many forms of invisible illness. Let’s raise awareness and bring about more real life research so better information and treatments can be formulated to change the way we all see and relate to invisible illness and disability.

If you’ve liked this post, please let me know and if we haven’t connected on social media, let’s do so here;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

Much love to you all
TBG πŸ’‹

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Shining A Light TO Show Just What Invisible Illness Is…….

The last few weeks I’ve felt myself disappearing down that shute, you know that tunnel, where all invisible illness sufferers go when health dips……BUT unlike past falls, I don’t stop……I just rest!  I rest, so that I can continue my own healing and my advocacy for all invisible illness goddesses and warriors around the globe.

I’ve had to rest because on Monday June 26, I am launching an ongoing awareness campaign to shine the light on invisible Illness. I’ve been watching videos, documentaries, reading articles, writing articles and blogs all about showing, sharing and bringing the invisibility of chronic illness to reality for those that live with them but also for those that walk this world with ignorance and uneducated thoughts, actions and feelings about how I and many others live every single day.

My campaign is about shining a light on how difficult it is to live with debilitating chronic and invisible illnesses. This is why I walk and talk my daily journey- the good, the bad, the indifferent and just the plain weird! Everyday I want to share a different story, so that greater awareness can be brought to the world. From Monday I will share a series of blogs about a variety of different invisible illnesses, some that I live with……some that others live with and through these stories brought about by conversations, you will see these illnesses in a new and different light. 
I want the light that I am igniting to bring about new conversations between you and your loved ones, friends, colleagues and even strangers. Because you see, when we begin to converse, we can begin to connect better and therefore we can better help each other get through the tough times that these illnesses bring.

On Monday, as I begin to shine a bigger light on invisible illness, I will be beginning with my own story and my newest diagnosis of (FND) Functional Neurological Disorder. Today, as a taster, I am giving you a brief introduction; This disorder occurs as a result of a problem with my central nervous system and my brain failing to send or receive messages correctly. The list of symptoms is very long as you will get to learn and many of them are extremely disabling. Also a lot of the symptoms that I will talk about, are also found in the diagnosis of MS & Parkinson’s Disease making it high level debilitating, life changing and hard to diagnose. Living with FND, sees me experience many symptoms all at the same time. What is difficult with this disorder, is that I have to live with frequency and severity of symptoms with a list of other chronic illnesses as well. So, you see describing what it is and how it affects me is a long process, but it is a process that the world needs to hear and see and that is why I am lighting the flame for invisible Illness.

I would love to connect with you, if you or someone you know, also lives with an invisible illness. 

Please connect with me here or perhaps on one of my social media accounts and let’s light the flame for invisible illnesses;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

TBG πŸ’‹

Tired, Weary, Broken & Fucked Up……..

So what happens when we fall……and we all do!

You know, those moments when we are tired, weary, broken & fucked up!!!!


These thoughts, feelings and actions occur when we live with invisible illness. These are the moments that make us need to keep fighting the pain of being chronically and invisibly ill. Illnesses such as anxiety, depression, autoimmune and neurological disorders fill us with scars that embed deeply into our mental, emotional and physical being. 

Beginning the process of healing and recovery from these debilitating illnesses takes work BUT throughout the process and progress, low energy succumbs and we fall……! We tire and perhaps stumble from all the work that it takes to recover AND it affects us…..and if this happens, we fall and we break!!!! 

When this happens, we feel that we have fucked everything up……all that progress-RUINED!

But these emotions that come and go when wandering a journey with invisible illness are real and we should not be ashamed of letting the world see them! We haven’t fucked up….it’s a stumble and yeah, if we fall, it’s just that a fall…..stand back up – be present and be YOU! Remember even mentally and physically strong people fall! This conversation that I am having tonight is such a strong anti-suicide message, for why fighting is so important to remember when we are overwhelmed with the chronic pain and suffering of these illnesses.

You are saying. . . but at these moments I’m too tired to keep fighting……Yeah, I get it, I’ve felt really tired too and YES I still tire after all my 15 years fighting……but I won’t give up, I don’t give up!

Invisible illnesses are diseases that can take a life time to recover from. They grind away at our inner most core, sucking the life out of us, just as we are rebuilding ourselves up from the ground. The fight becomes a moment to moment battle everyday and as we go, we have to listen to the self whispering, but more than that we have to stand up to our voices and the external voices who don’t recognise our illnesses as illnesses……it’s exhausting, and it’s why we get tired, weary and feel broken and fucked up!

These illnesses, these invisible fucking illnesses never take holidays so every day and every night you have to fight, fight and fight again. You might be finding the biggest reasons in the world to give up, but those reasons don’t need to be your reality. In fighting these illnesses, no one can see or know how hard you’re working to keep going every day. The fight is hard and in the walk to recovery you will feel broken.

BUT, WE NEED TO FIGHT……I know, you are saying, you don’t want too,  sometimes I have said that too, but you don’t get to stop. I’m sorry, but the statistics say life is better than death and I insist you go on living……I am and I do!

But the good news is that when you choose to fight, you choose to take your next breath. Our invisible illnesses want to steal us of everything that we want to and need to experience today, tomorrow and the days after that. But we are  not going to let these illnesses win. We are going to breathe in and out, one breath at a time, each and everyday knowing that this is our best fight and it’s enough, it will always be enough, because I am enough and you are enough!

Being tired is OK. Being weary is OK, feeling broken and yelling that we have fucked up is OK. But by taking the next breath…..after the yelling session, is all we need to do…..because that’s the process of the healing fight.
If you are resonating with my thoughts, feelings and conversations tonight please let me know, by liking and sharing this blog.

 I write about my experiences with wandering a journey with all the invisible illnesses that are part of me because when we share our stories we connect and help each other.

I am a advocate and speaker who has made it my mission to change the way healing and recovery is seen for all that live with invisible illness.

If you would like to connect further, please do so on my social media platforms;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/Just_1_Goddess

http://www.instagram.com/the__barefoot__goddess

If you are struggling……that’s ok but remember to find the breath…..breathe in and breathe out so the fight continues.

Much love 
TBG πŸ’‹

β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”

“Oh But You Don’t Look Sick”…..

Lately, I have been looking back at the journey I’ve wandered and it’s sad to think that I’ve been chronically ill since 2012. Every single day, since then I’ve learnt so much about the ups and downs related to my hidden health conditions. I want you to know that these health conditions use what I would describe as a kind of lottery system, that give me highest of highs and the frightfully lowest of lows. Anyway, with that said, I sit here journaling for the benefit of all the sick and healthy people across the world. As I walk and talk my journey to more people with so many varied chronic illnesses, i see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person. I want to tell you, out in the big wide world how the phrase, “Oh but you don’t look sick” can seriously impact those people like myself, who suffer with invisible and chronic illnesses . It is time to look deeper into  what chronic pain and chronic illness looks like in the real world, so that they can receive the necessary medical care. 

As you are reading this, you may have just connected with me through social media, this blog or maybe you might be a good friend or family member. I just want to take an extra moment to talk to you about the phrase that I mentioned earlier “oh but you don’t look sick.” I want you to remember that as you are saying that to me, you have never seen me at home on the yukkiest and darkest days. So, at the moment that you are seeing me – you maybe right, I may not look sick or just because you can’t see my pain or illness, it doesn’t mean I am feeling at my weakest. Sometimes, dressing up helps mood, or even if it doesn’t help my pain, it helps to mask it. I’m so sorry if that messes up the idea of looking sick – but that is one indication of chronic and invisible illness.  I don’t mean to sound ungrateful for what you may mean as a compliment, but it is kind of insulting to me or anyone that is chronically ill. That little phrase dismisses the pain and suffering that I and so many go through on a day to day basis. So, if we have just met, and I open up to you about my painful neurological condition and I don’t even begin to mention my other autoimmune conditions that I live with, please don’t think you’re complimenting me. If you follow it up with but “you’re so strong ,” you are implying that being sick should make me weak. Maybe you think I’m exaggerating my pain because you perceive me as strong. When you are ill for such a long time, strength fades, but pain doesn’t.

This journaling and blogging session is not about only me, it’s about all of the incredible souls that I have connected with through support groups to keep me from giving up. By telling me that i don’t look sick and that I’m strong, BRAVE or beautiful you are reinforcing the idea that I don’t want these medical conditions taken seriously. Maybe I should not take any pride in my appearance, when I am on my sickest days so your conceptions of these illnesses and my illness will fit together. The thoughts of what being chronically ill looks like is what stops people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with respect. We are the people who even lose the much needed family support during their illnesses because their families do not understand or believe that being sick can look so many different ways. SICK LOOKS DIFFERENT FOR DIFFERENT PEOPLE ON DIFFERENT DAYS. 

You don’t see me at home. You don’t see me the way my close network do. The way I live is so horribly embarrassing that even some of my doctors don’t see all of the pain. The mask I apply is there, because of the negative experiences with showing vulnerability. Even the necessary doctors’ appointments and my God, there are many are excruciating hard because  it means that I have to take a shower with energy that I do not have. I let many of you see what I want you to see because to me it feels uncomfortable with showing you the truth. I don’t want to be ridiculed by the “oh but you don’t look sick” scenario each time I venture out.  So, if you see me outside of my home when I’m dressed up, don’t presume. Living a chronically invisible ill life is isolating and lonely and there are many days that I don’t have the energy to make myself look presentable. There appears a huge amount of stigma around when we the chronically ill can’t shower ourselves because we feel that sickly, but there is just as much judgement because you can’t see the whole story within a moments notice.  That’s why you only see me and most invisibly chronic ill people when we apparently don’t look sick. 

So,  I can’t explain my whole life’s chronically ill story across my blog or in a short conversation because without the endless health specialists notes and medical timelines,  I cannot tell you about the hours and money that have gone into tests and examinations that I’ve had done and then there is all the extra stuff that I have taken or done to maintain a manageable pain level. In conversations apart from now I won’t tell you how many doctor visits that I average a week or how many pills that I’ve tried and have had horrible side effects or allergic toxic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with me – yes, I have been turned away by many doctors because I’m too complicated !!! I want you to understand the frustrations that I and so many deal with on any given day. Being chronically ill is like you are slowly losing your sanity and that’s what makes us feel even worse. So if I brush my hair to try and look ok when I leave the house, but I carry so much pain behind the pretty faced selfie don’t think that’s my everyday experience. I go out of my way to document the moments that I enjoy life, so when everyone else is out there having amazing and exciting life experiences and I am alone in my lounge room with my heated blanket I can see evidence of the few times life shined.
So, to end positively, I do appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you think that “but you don’t look sick” phrase you aren’t complimenting me – so it’s probably best to stay quiet, with my favourite saying “if you can’t say anything nice – don’t say anything at all”.

             Life NOW- 2016 & beyond!

** I want to tell you that it’s at this point along the journey looking for healing and wellness through endless doctors sessions and research that I am now, standing strong because of a doctor that saw me at my weakest and was not going to let me take my own life. I am currently undertaking weekly physical and psychological therapies in order to be strong and well. I have also returned to my vegan dietary choice to strengthen and alkalise my internal health. Through this therapy, my love for writing again came and why this blogging map is here for you but probably what’s happened is my love for mindfulness with meditation and yoga. I am stepping a new and revived pathway to trigger brain, body, health and life to commit to a life to love. This is me, this is my passion and purpose – this is life being authentic and vulnerable so if you see, me out and about don’t utter the words “oh but you don’t look sick”. I have a incredible long journey to go, but I am on a path for myself and so many others. Let’s walk together for life in brilliant colours!**

I hope you may have resonated with some part of this – if so make sure you connect and let me know;

SOCIAL MEDIA 

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Lisa-Raie πŸ’‹

Wandering Towards Wellness, Globally”

That’s The Thing About Pain….It Demands To Be Felt πŸ™πŸ»


People who suffer from severe, chronic pain and illness know how it can change life. It is so very cruel making it hard to enjoy even the most simple daily tasks. Chronic pain as illness is still not that well understood. The medical industry used to believe that pain was a underlying injury or disease. With these thought patterns doctors focused on treating the underlying cause of the pain, with the belief that once the injury or disease was cured the chronic pain or illness would also disappear. If doctors found no underlying cause  for the illness or pain, then the patient was told that very few treatments would be available, or worse, β€œthe pain must be in your head.” It’s sad to say, but some doctors still practice these thoughts , having no appreciation for the unique problem of newer theories about chronic pain and illness.

Luckily there is a new community starting to understand that if pain or illness is no longer a function of a healthy nervous system then the chronic illness/pain itself becomes the problem and needs to be treated as the primary point of call.

We the chronic pain and illness patients need to stand as one, to raise awareness so that more conversations are started and more research for information and treatments are given.
Do you walk through life with chronic pain or illness- if so please connect with me! If we all walk together, our global governments and health care departments will need to listen and make appropriate choices and changes.

Connect with me today on one of my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Let’s walk together for our health

Lisa-Raie πŸ’‹
“Wandering Towards Wellness, Globally”

Chronic Pain & Illness Deserve Respect and Research Too…….

CHRONIC PAIN & ILLNESS DESERVE THE SAME AMOUNT OF RESPECT and RESEARCH AS CANCERS……please read & share doing so you support your friends wandering a lonely path towards finding wellness……..

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS . It starts with one and if just one other person then shares this, then another, then another-before long we will have a global conversation and greater awareness of the importance for better healthcare for chronic and invisible illness.
THIS IS MY FIRST AWARENESS CHALLENGE-PLEASE HELP ME SHARE MY MESSAGE GLOBALLY……and this is why;

More work needs to be done for chronic pain and illness. The numbers of people globally feeling that they have no way out of their chronic pain and illness is growing at scary rates. 
Our Governments need to wake up and give this the same attention it gives to cancer. One day of the year, for “RUOK” day, that spotlights mental illness and depression doesn’t cut it and the effects that these invisible illnesses have on the individuals, families and friends is devastating.

I can say this, because I breathe, walk and talk the journey everyday. It’s my mission to open up more discussion and conversation for myself and many others. WHY, because we all deserve a life that we love. 

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS .
Let’s send this viral and start walking, talking and wandering towards a life of wellness.

Living With Chronic Illness – Part 1 – Functional Neurological Disorder.

Living with debilitating chronic and invisible illnesses are so very hard. This is why I share my story, so that greater awareness can be brought to the world. Today I share what will be a series of blogs about the different illnesses that I live with. 

The  illness I am beginning with is (FND) Functional Neurological Disorder and below is what it involves and the many symptoms that I suffer with – at times all at the same time, and other times seperately. (FND) or Functional Neurological Disorder occurs as a result of a problem with my central nervous system and my brain failing to send or receive messages correctly. 

The list of symptoms is very long and many of them can be very disabling. Living with FND, sees me experience a number of symptoms at the same time or  perhaps just living with one or two symptoms at a time as I spoke about earlier. Just as with my other chronic illness and autoimmunity, I can find frequency and severity in my symptoms. Also a lot of these symptoms are also found in the diagnosis of MS & Parkinson’s Disease making it high level debilitating, life changing and hard to diagnose.

Below I list the particular groups of symptoms that are commonly found in FND and to which I live with;

Motor & Movement Symptoms;

  • Shaking, mostly found in my arms or legs 
  • Uncontrollable and perhaps painful muscle spasms usually in my hands or feet. 
  • Uncontrollable movements such as jerks and twitches.
  • Problems with walking such as dragging my leg and uneven steps causing many falls.
  •  Limb weakness within my arms or legs where it doesn’t feel normal or I can’t hold any weight through them.
  • Paralysis with an inability to move any part of the body, usually on one side only but not always, which lasts a period of hours, days or longer. At present I have paralysis in the right side of my body which has been with me for many months.
  • Swallowing difficulties where I  can lose the ability to swallow or a it may feel like i have a lump in my throat.
  • Difficulties with my speech when my words may become slurred, stuttered or even maybe lost temporarily altogether.
  • Bladder and bowel problems which may include loss of sensation leading to incontinence and some kind of catheterisation.

Sensory symptoms;

  • Dizziness is the feeling of being lightheaded and not in balance and sometimes feels like my surroundings are spinning.
  • Being sensitive to light, sound, smell, touch or taste is a ongoing familiar symptom.
  • Nerve pain often feels like my skin is crawling with bugs and sometimes gives me electric shock sensations.

Brain Symptoms;

  • Memory difficulties and/or loss.
  • Poor concentration.
  • Word finding difficulty.

Other areas that can be associated with FND can be;

  • Chronicpain
  • Migraine
  • Fibromyalgia
  • Stress
  • Anxiety
  • Depression
  • Seizures

This is life as I know it and at present there is little known about FND, so my medications and treatment plans are very much being trialled. It is very much invidualised to my particular journey. It is my mission to raise awareness and funds so that more research can be done to help myself and so many others find a way to live free of functional neurological disorder.

I would love to connect with you, if you or someone you know, also lives with FND. Please connect with me here or perhaps on one of my social media accounts.

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR The barefoot goddess

πŸ’‹