Chronic Illness Awareness

Defining Disabled.

This post has been brewing for some time now, but I have not had the brain power to write it. I am asking you to take five minutes (or longer, depending on how turbulent the brain fog is today) to read.

After seeing this Facebook post by a fellow Melbournian woman, I knew that I had to push past my own personal issues and write; that this was the time.

I remember the exact moment where my Gastroenterologist used myself and Disabled in the same sentence.
He spoke so freely.
There wasn’t a breath, there most certainly wasn’t a pause.
I expected a pause.
Please, allow me to absorb what you have just said before you keep talking Gastroenterological language.
It sounded a bit like “Blah blah blah, now that you are disabled we should apply for the Disability Pension, blah blah blah”.
I am sure my mouth was on the floor and I held up a finger to stop him, and said, “Now wait a minute Mr. I’m not disabled
He DID pause at this point and said, “Ah, yes you are, blah blah blah

Maybe it was my inability to accept that I was Chronically Ill, or maybe it was purely the naivety in me (which heavily consumes most of society), but at that very moment I did not want to believe that, nor could I understand how, I now defined as Disabled.

What is the first image that pops into your mind when you think of the word Disabled?
Majority of you would say this:

disabledlogo

because this is the image that defines a Disability worldwide.
It is plastered at every Shopping Centre Parking Bay, every toilet, it is on the permit of every car with a Disabled passenger or driver, and it is in every Government centre or office, every hospital, every Doctor’s Clinic.

I do not require a wheelchair, but this is the picture that I am bound to; this is the picture that now defines me.

The term Disabled being outlined as, “having a physical or mental condition that limits ones movement, sense, or activities“.

In the definition it is clearly stated that not only can the condition be physical or mental, but that it limits ones movement, sense or activities.
Here is a newsflash to the Government Departments Worldwide:
you have chosen an image that shelters sufferers of VISIBLE Disabilities, ie. special needs, those who use a wheelchair, walker or crutches as transport.

You are feeding the wrong message to society, or maybe it is in fact that your message needs an update.

You have separated sufferers and put us on scales of which Disease or Disability outshines the other, and apparently in order to qualify as Disabled, society believes that I have to physically look SICK and IMMOBILE.
You have put some of our heads as targets to be subjected to bullying.
Our illnesses and personal struggles are questioned, mimicked and misunderstood.

People walk down the street and see a person from crutches emerging from their car in a Disabled Permit Zone, and they think “oh, they’re Disabled”.

But what about sufferers like Justine? She parks her car in a Disabled Permit Zone (with a permit), tries to go about her day as normally as possible, and receives judgement from strangers behind a pen and notepaper.

What about the rest of the population suffering from illnesses that cannot be seen, and whom qualify for a Disability Pension or Permit to display?
What about the Cancer patient who has not lost their hair?
The MS patient who still has minimal mobility?
The sufferers of Fibromyalgia, POTS, Chronic Fatigue, Depression and Anxiety with symptoms that cannot be SEEN?
Or how about me, one of many sufferers of Gastroparesis?
You cannot SEE my Nausea (unless I am vomiting). You cannot see the Chronic Pain, Dizziness or Fatigue that accompanies my disease and confines me from partaking in a fulltime job or travelling independently.
I am sure that most of your symptoms also go unseen. We suffer silently or invisibly.

Society has been educated to assume that the ill, must look ill; that our exterior must match that of the Disability Symbol.
But this is far from the truth.
It is POSSIBLE for an illness to have stricken a body that is still very mobile and appears to relatively “normal” on the outside – a body that is young or old.
It is POSSIBLE to be chronically ill, but have days where you are feeling well enough to experience your day “normally”.
We might be able to walk on some days, you might see us exercising, you might see us driving.
This does NOT mean that we are not Disabled – it means that we are having a good day of health, and there is NO SHAME in that.

Please, do not take this post as an intention for me to discourage others.
I am one of you.
I am Chronically Ill.
I AM Disabled, but I am one of many who are tired of being judged based on my appearance and its relation to this symbol.
I am tired of having to explain myself and be compared to the world’s accepted view of a Disability.

The Government doesn’t just willingly hand out Disability Pensions to everyone that applies. We go through a gruelling application process, a handful of rejections, appointments, interviews, phone calls and not to mention, we are suffering enough day to day with our symptoms.
We don’t want the pension, we NEED it.
We would choose health every day, if it were possible.
We don’t want to be like this. I know myself, being twenty-three, I should be enjoying my life and instead I am stuck at appointments and fighting for a Government income to help pay for these appointments.

A Disability is a Disability.
There should be no further questions, right? But there ARE and that is why I am suggesting a change altogether.

The Disability symbol itself needs to be altered to something more accepting of all circumstances, or there needs to be a complete reinvent of a symbol for those suffering with Illnesses with symptoms that are not visible.
Think of words that describe us, but do not limit us to the image of a wheelchair?
Maybe we do not fall under the atypical “Disabled” category, and need a category of our own?
Perhaps a letter such a H (for Handicapped as it is a much more unified word), or I (for Illness) should be used on a sign as opposed or alongside the current one?

If you are reading this and can admit that you are one of the judgemental people above – the ones who wrongfully assume that in order to be Disabled, you must be in a wheelchair or visibly impaired – then you really need to make a change. Please think before you do something as pitiful and hurtful as above, based on another’s appearance.
How is it fair to bully, when you are unaware of one’s circumstances?
I can assure you that you would not like it if it were you, or a loved one being treated this way whilst being ill. So, what makes you think that we enjoy events like this one? It’s plain and simple, just don’t do it.

At the end of the day, this post won’t stop you from passing judgement and neither will the symbol.

But just let it be known that we (those suffering with Invisible and Chronic Illnesses) have braved more than your words and cruelty.

You might not think there are many of us, but we come in numbers, and we are stronger than your view of us.

 

LL IV

I apologise in advance for disappointing you, but I fear that I am not enough for you.
All that I am.

All that I am not.

And, I don’t know how to be more than this… especially at the moment.

What do I do?

Which road do I take?

When is the right time?

How do I do it?

I am unable to offer what I used to.

I am still selfless, but more selfish.

Most times I don’t listen to full sentences as my brain is weak and lacks in concentration, so forgive me if you have to repeat things.

I might need to hold onto you to walk, and some days I won’t be able to walk at all, but I will try every day for you. I will push myself until I fall.

The nausea will stop me from speaking some days, but on these days I will try to be a better listener.

I will put up a defence wall when I feel threatened, and I will let you win every argument because I don’t have the energy to spare on fighting you.

I fear that the progress I have made will never be enough, as I will never be the person I was before this.

Each day will forever remain a challenge, and I will forever be different to how you once remembered me.

I promise you, though, that I am trying to be more than this illness.

I am trying to be more, for you.

I relish in your energy, using it as a temporary bandaid for my symptoms.

I will brave each bad storm, in hope that when it passes, we can walk hand in hand through the puddles together, all of the way to our rainbow.

I want you to note my flaws, and accept them. Maybe in time I can remould them into something beautiful.

I want forehead kisses when the days are dull and my heart feels empty.

I want you to glide your tongue over every inch of my skin, reminding me that there is a warmer, softer feeling beyond chronic pain.

I want to be reminded of the world outside of this plague of disease.

I want you to love all of me, like I love all of you.

Having a Bad Day?

I know exactly what the bad days feel like.
You are most likely curled up in bed, or on the floor, not knowing how to get up and face the world.
You are longing for someone to remind you that you are worthy of this life, that you mean something.
You want it all to end…

Here are a few of my personal favourite posts that might get you through that bad day and make you realise your importance:

You are NOT your Illness

Defining Normal

You: Your Worst Critic

Letter To Myself

The Truth is Hard to Face

Invisible Illness Progress Portraits

love and hugs,
C xo

Please, don’t touch me.

Everything my Specialists put into me, makes me very, very sick. I make progress, tiny progress, but then lose it all when they come up with another crazy drug trial.
And each time they are become more and more convinced that it will help me.
Because they are desperate to fix the unknown case that is me.

They have this stupid “we have to try everything” approach, but by everything that means every drug on the market, and they refuse to believe that maybe my body needs a moment to rest.

Almost a year of digestive medication after digestive medication, pain killers, antidepressants, antianxiety medication, supplements and now steroids.

I have not slept in five nights, am in excruciating stomach pain and have constant nausea and dizziness.
Symptoms that I was finally gaining control over.
I was eating meals independently, and am now eating zero. Bye-bye to my weight gain and positive thinking.

What if the answer is very simple?
What if I just need a month or two medication free to see how my body adjusts? I do not remember the last time I was drugfree, how sad.
How do you tell multiple Specialists that you do not want to be poked, prodded, used as a guinea pig anymore?

I do not want to be touched, in fear of you breaking me.

When your support system fails you.

Chronic Illness is terrifying and traumatic for the person who has it, but apparently it is as equally traumatic for our support system and results in many of them not being able to cope and disappearing on us.
I suffered for many months alone before someone contacted me to offer support. In this time I experienced many traumatic things on my illness journey, things that would have been good to talk to with family and friends. I didn’t have a support network back in my early days of illness, and nobody should have to face it alone. So please, if you are newly ill or experiencing hardship, please reach out to someone if you are unable to talk to friends or family.

I should have reached out to a therapist a year ago, but instead I battled alone and held in all of this pain and suffering from the dramatic lifehange. I sat back hoping that my closest friends and family would be there to support me, but it took months before they did, and not all of then ended up by my side.

An incident happened today which has prompted me to ask the question below. I had a very close friend of close to nine years who has silenced me since getting ill. She became busy, didn’t have time, didn’t care. So, I (right or wrongfully) approached her and let out my feelings of disappointment and let down, as I have learnt not to hold onto feelings and let them eat at you, and it escalated into the usual hurtful comments about my illness, Facebook delete and the good old’ “don’t message me again”.

What is one of the inconsiderate, uncalled for (and possibly downright nasty) things that your supposed friends, loved ones or Doctors/Specialists have said to you along your Chronic Illness journey?
Please share below.

We are dealing with so much in our lives already, but society assumes that we are; exaggerating or weak, which results in having a bunch of these idiots throwing their opinions and ideals into our lives, telling us how to live and what is right and wrong.

I was told that my illness has indeed defined the person I am today, and that I also need to be better than the illness and not weak; that I use the Illness Card as a victim card.

See, this is what is wrong with society ^

And this was coming from someone who I have spent a lifetime with and who was meant to care for me.

Take a walk in our shoes and then tell me how you feel. You unfortunately lose a piece of yourself to your illness but that does not mean that you don’t try your absolute hardest every day, even though you might miss lunch with a friend, or a birthday, or work. It is NOT an excuse or an “illness card”. It is the way it is. You/we are doing the best we can, under the circumstances that we are in, and we shouldn’t be quiet about it.
And it is a shame that the people who surprise us the most are those within our support group. They don’t seem to understand how hard it is for us to struggle each day, and they expect us to get up and just face the world with open arms like they are able to. If only they had a glimpse of what this feels like, and the loneliness surrounding hardship, so they would understand entirely. Then I am certain that they would think before spitting out the harsh comments.

I have received it from Specialists before, but not from people who are meant to be apart of my support network, to which I received today.

We don’t deserve treatment like this. We deserve respect, and if we sit in silence we will not be heard.

Stand up for yourself and know that you deserve better, whether it’s a smartass Specialist, a disrespectful friend or even a family member who thinks they know your body more than you do.

Protect yourself first because I assure you nobody else will.

Overwhelmed.

The feeling I get when I receive emails like this from my readers, is quite overwhelming.
How can my little Australian rants about illness, sadness and life touch so many of you?

When I am having a horrible day of symptoms,
when I feel like I have nobody in my corner helping me fight,
you remind me that I am far from alone.

(I have asked permission from both readers for this to be published)

Thank you for bringing joy to my darker days.
Just another reminder that we are not alone.

Feedback.

it isn’t fair.

Sometimes you just have to turn off your phone,
lock yourself in a dark room,
shove headphones in your ears,
and cry your fucking eyes out.

Scream every lyric to every heart ballad you can find,
because life really sucks,
and you were dealt a shit deck of cards,
and it isn’t fair, it isn’t fair.

Invisible Illness Progress Portraits (IIPP)

A roughly edited conversation between my Acupuncturist and I which sparked this idea:

Cass: “We said that I should be back at work by this time. I don’t think that is going to happen anytime soon”

Acupuncturist: “You’re right, it probably won’t happen anytime soon, BUT we have made progress”

Cass: (thinks to self) What progress have we made?

Acupuncturist = 1
Cass = 0

With Invisible and Chronic Illnesses we tend to lose sight of how much progress we have actually made, as we live with pain and other symptoms every day.

I know that I personally still walk around feeling saddened by how weak my body is. There is something inside of me that still cannot accept this, and thinks that if I am not back at 100%, then I have not made improvement at all.

If we show on the outside that we are feeling slightly “better”, society automatically assumes that we are cured from our disease. They cannot understand that we still suffer, but have made slight improvements, or that we have learnt to manage our symptoms better.

If you are having similar thoughts and are currently drowning in symptoms of your Chronic Illness, let me firstly tell you that you are far from alone, and it DOES get better.

Now, I can see you all of the way here from my desk in Australia.
You are rolling your eyes, you are shaking your head, you are sighing because you have heard that statement so many times before. You will tell me that I don’t understand, that I do not feel what you feel.

But, I do.

I know how you feel, because I have felt the same way for almost a year fighting my own illness and inner demons, and my fight is FAR from over.
I wanted it all to end, and have contemplated suicide more times than I can count on two hands.
I saw no reason for me to stay here in this world if I had to continue fighting this way, being a guinea pig for Specialists all over the city, feeling this neverending loneliness.
I was tired of the appointments, and the dead-end answers I was reaching.

I was even more tired of taking medication for no solid reason, the money coming out from my account and most importantly, hearing people tell me “it will get better”.

But I’m here to tell you that it DOES get better, and I have discovered a way of proving it to you.
I wish someone showed me this ten months ago, so I could’ve started learning to love and respect myself, and my body.

I have made up with a term called Invisible Illness Progress Portraits (or IIPP) where you take a photo of yourself once a fortnight (or month), and store them in a folder on your laptop or print them off and attach them to a calendar or poster board. I write how I was feeling at the time of each photo, and obviously date each of them.

I know that taking a photo of yourself during illness is terrifying and probably the furthest thing from being considered as “attractive”.

We are obviously not going to look like Kim Kardashian in her published Selfie Book, and that is fine because THAT IS NOT THE POINT OF THIS.
The point is to begin a collection where YOU can actually SEE the progress you have made, and so that when you are a year from now you can look back and realise how brave and strong you really were.

And when Specialists like mine say “you have really made progress”, you can say “Yeah, I really have”.

You don’t have to publicise it. Keep it as a present for your future self.
If you do not want to take photos of your face, by all means take photos of something that you have conquered in the face of your illness. For example, a bigger meal portion, a trip to the Doctor, a walk to the bathroom.

I myself have only begun this, so I don’t have many photos of myself during my rougher illness days, (that’s where my regret comes in) but looking back on the photos that I do have, makes me realise how far I have actually come.

I have a few scattered over the months to show you, to give you an idea.

Top Left: April 2015 Bottom Left: June 2015 Top Right: Jan 2015 Bottom Right: Dec 2014

Top Left: April 2015
Bottom Left: June 2015
Top Right: Jan 2015
Bottom Right: Dec 2014


Top Right: Early August 2015 Bottom Right: Me, today! Top Left: June 2015 Bottom left: July 2015

Top Right: Early August 2015
Bottom Right: Me, today!
Top Left: June 2015
Bottom left: July 2015

I was severely underweight from living off of dry crackers, water and mashed potato, my skin all over my body was riddled with acne and I could not walk more than a metre alone. You would never have caught me wearing anything but an oversized jumper and loose leggings, as I was too embarrassed of my protruding bones, and I felt absolutely horrid every single day.

A lesson I am still trying to learn is that Progress does not mean a drastic change.
Progress means slight/gradual.
You can walk to the fridge one day,
You are able to shower alone,
You are able to have two mouthfuls rather than one,
You have put on one kilogram or lost a kilogram.

All of these examples may seem tiny, but they are still progress!

So, take a moment and think about yourself. Tell me honestly how much progress you have made today, and it is okay if you can honestly say you have not made any.

I know that when I look back at these photos, I realise I can walk better than ten months ago, and more than before even though it is nowhere near close to what an average person/the old me used to.

I am able to eat more, without throwing up or feeling excruciating stomach pain.

I have less nausea than before, and less frequent violent dizzy spells which accompany.

As my images expand over the next few months, you will slowly see me wear a little bit of makeup, have the energy to straighten my hair, wear nicer clothing, and most importantly, smile.

This is me from a few days back.

This is me from a few days back, and I felt really good for a change.

In between these images, you will also know when I have gone backwards, because I am obviously not cured!
You will see the days that were rougher than others; where I cried beside the toilet bowl, where I had a cold towel over my eyes to help my migraine, where I could only stomach liquids all day.

And there you are again telling me that you don’t want to be reminded of such a time, that you want to rid the negativity from your mind. But if you don’t face who you were through the illness, how will you grow? How will you notice the change in yourself?

I can promise you that you will appreciate yourself more for having battled through those awful days and conquering when you thought that it was near impossible.

I know I do.

I would absolutely love to see your progress, (remember that Progress means gradual!) so if you are willing, send me an email via my contacts link!
Alternatively, you could tag IIPP or link to IndisposedandUndiagnosed in your post, and I will check the tag as frequently as possible!

Please, in celebration of Invisible Illness Awareness, join me in documenting your journey.

The Truth Is Hard To Face.

One day you are going to look back at this moment and realise that this was you at your strongest, not weakest;

That what felt like the end of the world, wasn’t;

That behind the tears and the ugly in Chronic Illness,

you were beautiful;

That you were destined for things beyond medication trials and side effects,

soulcrushing appointments and trying to keep food down;

And on this day,

you’ll know that you

defined brave,

and that you were loved more than you knew.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.