Category Archives: Health

Rare Disease Day


February 28this Rare Disease Day. The Fair for Rare campaign is concerned with raising awareness about rare disease and petitioning for equal rights.

I thought now would be the perfect time to briefly share my rare disease story in support of the Rare Voices initiative.

I hope this post serves to remind those with a rare disease that they’re not alone and also raises awareness about rare disease among the general population.



Rare diseases fit into one of two categories. They’re either life-threatening or chronically debilitating and in all cases, cannot be prevented.

Worldwide, there are less than 1 in 2,000 people living with a rare disease diagnosis. These are either acute or chronic versions of illness and affect anyone, at any age.

Rare diseases are symptomatically complex and this makes them difficult for clinicians to address. There are no cures for rare diseases and no truly effective treatments. Many well-managed rare diseases continue to present an ongoing risk of death.

As you can imagine, living with a rare disease is challenging. This is why one belief behind the Fair for Rare campaign is that we deserve a fair go.



I have a unique type of intestinal failure (IF) called Chronic Intestinal Pseudo-Obstruction (CIPO). It’s organ failure just like heart failure or kidney failure and it’s very rare.

CIPO is a motility disorder. My small intestine often stops working (as if there is a physical blockage) then when it is working; the movement is much slower than that of a healthy intestine. Slow transit time through the digestive tract causes bacterial overgrowth and often, translocation of bad bacteria from the gut into the bloodstream (known as bacteremia), resulting in even more illness.

Unable to absorb everything I need from food in order to live, I have to rely on home parenteral nutrition (HPN) for sustenance.

Intestinal failure requiring HPN is extremely rare with less than 300 people across Australia and New Zealand who fit into this category.

As with many other rare diseases, I also have other medical issues to manage in addition to the CIPO, which adds extra layers of complexity to my health management.



I was a completely healthy child… up until the age of eight years old. Then, seemingly out of nowhere, a mysterious illness knocked me over and ran away with my childhood.

It started with abdominal pain, severe bloating, back pain, vomiting, diarrhoea, reflux and radical weight loss. Doctors and other health professionals worked an entire year to find out what was wrong with me.

At nine years old, and down to a weight of 23kg, I was finally diagnosed with CIPO by a gentle, concerned gastroenterologist who would continue to oversee my health care during my childhood and adolescent years.

My rare disease was only found because a visiting radiologist from the U.S.A was present on the day that I had a barium swallow test. The radiologist had previously seen CIPO in America.

In 1992, there were only 52 other known cases of CIPO in the world and HPN was not considered a good long-term treatment option.




I looked like an anorexic girl, all skin stretched over bones with a white face and dark rings under my eyes. Unlike those suffering with Anorexia Nervosa, I ate food and as a result, carried around a huge, angry belly on my stick figure.

I lay about a lot (often on my mother) due to malaise and lethargy. I wasn’t absorbing adequate nutrition so I was constantly exhausted. I had sleepless nights, missed out on school and frequently begged for it to all ‘go away, please!’ because the pain was often unbearable.

My growth stunted and by age thirteen, my bone density was delayed to that of a ten-year-old. I was also still a long way from beginning puberty.

During the six hard years from age eight to fourteen, I depended on daily nasogastric tube feeds and ate as much real food as I could. Having extra nutrition pumped into my sluggish gut was a living hell and for all the pain and grief it caused, did not add much substance to my bony frame.

Gaining weight became the biggest focus of my childhood. Fattening me up was everyone’s number one goal but with a small intestine that didn’t work properly, this only equalled increased suffering.

Other organs began to fail in addition to my small intestine. Every day was riddled with anxiety. I developed severe anxiety and depression as a result of both biology and circumstance.

After countless hospital admissions, intravenous nutrition (HPN) became the only possible treatment left to try. At age fourteen, I started HPN as a very last resort, via a central line in my arm. The risks were great.

I gained energy, grew taller and fatter and finally started developing into a young woman. Although I gained new life, I didn’t have a normal adolescence but it was a huge improvement on the life I had with nasogastric feeds as a child.




I soon exhausted the use of central lines in my arms and cycled through several infusaports placed in my chest for long-term intravenous access. This required many admissions to hospital and treatments for either infection, technical hitches with my line or the new strain of illness I soon became familiar with (theorised at the time to be an inflammatory response stemming from my gut).

This new illness was mysterious. There was no evidence in the medical world of anyone else suffering from the same combination of symptoms. I experienced raging fevers and severely abnormal bloodwork, among other things. After a couple of trial and error years, my gastroenterologist found that steroids treated the mystery illness. Today, there is evidence to suggest that the early formulation of HPN I was on may have been the cause of these regular inflammatory flare-ups.

I developed a hyper-vigilance about my body’s functions and felt deep shame about the way I looked. I was highly stressed in social situations and this was mainly because I lacked control over my body. I always had unpleasant symptoms and a tube, somewhere, hanging from me that if I didn’t hide, invited unwelcome attention.

Society taught me that I had to hide my embarrassing IF symptoms and treatments if I wanted a chance at being accepted. Kids at school would tease me almost every day. Adults would give me exclusive attention that I didn’t want. I was so radically different from my peers and at my core, I felt defective.

My early life of rare illness caught up with me in my twenties. I started antidepressants and psychotherapy. Sickness and medical experiences contributed to complex trauma, unhealthy thinking and maladaptive behaviour.




I’ve been on HPN as life support for 22yrs now. It helps – a lot – but it isn’t a cure for my rare disease. Like real food, the effect of HPN runs out and the tank has to be topped up regularly. I can’t do without it for long.

On HPN, I look a lot healthier than I often feel. Intravenous nutrition gives me a much better quality of life (in fact, it saved my life at 14yo), but it’s important to understand that HPN is an expert at disguising the brutality of intestinal failure.

Some days I can’t get out of the house due to exhaustion and other physical symptoms. Other days I can’t get out of the house because of severe anxiety. So when I manage to get outside and do normal life stuff, it’s a big win for me. I then have to spend time recovering, depending on how draining living life normally has been on my health.

Social occasions centred on food and eating are problematic at best. I become dehydrated during the day when I’m not infusing fluids. I’m restricted with what I can do at night due to infusing the HPN over 12hrs.

Some of my life-threatening concerns are liver damage (from the HPN), central line infections, central line malfunctions and loss of central venous access (my overused veins are terribly scarred and either tricky to work with or completely useless).



People rarely hear about the rare cases. This is why it’s so important to raise awareness about rare disease – so others can understand and support those of us who don’t fit into mainstream boxes.

Intestinal failure is rare, misunderstood and produces symptoms that are unfit for society. Us IF bods are the minority and don’t carry the mass appeal and familiarity of illnesses such as cancer, diabetes or multiple sclerosis, but we too deserve to be understood and given a fair go.

We live in an era of ending stigmas. I’m only one voice of many out there with a rare disease. We need support.

Thank you for reading this post and in doing so, caring about us rarities on Fair for Rare day.




I’ve arrived at a December T-junction. One sign points west, down the road I always travel and the other sign points east, down an unfamiliar road.

To the west, is a desert with weeds tumbling about. To the east, there’s grass and tall conifers. I find the green inviting but the unknown challenges in that direction cause me to hesitate.

I look west again. I know the condition of the road and the obstacles I’ll face travelling it. I recognise the destination but I get burnt in that desert every year so the familiar scene doesn’t comfort me.

I have to make a decision so I force myself to walk. I move east, away from the desert toward the glimmering green. Halfway down the road, a warm breeze carries faint laughter and music to my ears. It sounds a lot like Christmas cheer.


Christmas is a difficult time for most of us, for various reasons. My greatest struggle at Christmas is managing (or not managing) pesky intestinal failure. When it comes to my rare, odd bod, sitting around talking and eating all day is an awful recipe for post-event suffering.

Every year I try to manage my intestinal failure better than the year before but still, I fail. The familiar demons of gluttony, boredom, anxiety and people pleasing all rear their ugly heads on Christmas day. Mix all these ingredients with sitting around eating all day and a large dollop of intestinal failure and Christmas day ends in Grinch-worthy horribleness.

Every Christmas, there are dips, chips and other foods to pick at before multiple main meals, delicious second helpings and how could I possibly pass up just a few mouthfuls of dessert? It’s a special day and I deserve to let go and enjoy myself as much as everyone else. But one of the ‘letting go’ consequences is a lack of mindfulness that results in eating more delicious food than my gut can handle.


I’m tired of being stuck in the desert year after year after Christmas. Even if the east road is more challenging, it’ll be worth my trouble for the sake of a better destination. This year, I’m taking the road that ends in less suffering.

I realise something has to change if I want a different outcome. Christmas day is unlikely to change. The something that has to change is me. I have to do things differently this year by making better choices. And this means walking a new road to a different destination.

I’ve been thinking about the various, automatic ways in which I respond to my environment at Christmas time and brainstormed ideas for healthier behaviours that will give me the best outcome.


I’ve written up a ‘Social Event’ note in my iPhone that has three sections. The first section lists what I’m not going to do. The second section lists what I am going to do and the third section lists essential truths I need to remember prior to, and during, Christmas day. This is going to be my GPS as I walk the new road, toward new territory.

I’ll try to believe that being polite is overrated and that my physical comfort is more important than making my loved ones feel good by eating their food. I’ll try to believe that missing out on food isn’t all that bad.

I need to remember that I’ll suffer afterwards if I make bad food choices on Christmas day and that the suffering isn’t worth the instant gratification or sense of belonging that eating brings.


Doing Christmas differently this year is going to require me to do some inner wrestling and tease apart some unhelpful habits. It’s also going to mean re-educating my family about ‘me and food’. But I’m optimistic that this year, I’m going to get Christmas more right than I ever have before.


What are you going to do, what are you not going to do and what are you going to try and remember this Christmas? Consider identifying your unhealthy habits and working out how you can change or tweak your behaviour to create a happier result.

Think about taking the east road that leads to more happiness and less suffering.

Any change that holds the promise of more Christmas cheer is worth a try, right? And if all else fails… well, there’s always wine.




Last month, I spent four solid weeks editing and rewriting seven chapters of my work in progress. These chapters formed the bulk of my submission to the FAWWA Emerging Writers Program.

When I decided to enter, I didn’t know that my body was launching a covert operation. It piled extra illness on top of my usual health problems. You know the saying, ‘the spirit is willing…’? My flesh was weak in capital letters.

My September challenge reminded me that perseverance is crucial to every version of success that exists.



Fed up with having to always put my body’s needs first (and in doing so, sacrificing my dreams) I knew I had to fight and fight hard, for what I wanted. Trading my ill body for a new, healthy one wasn’t an option (dammit). I had to do the best I could with what I had or miss out.

For well over a year, I’d been longing for a writing win. All my concerted efforts had not earned me any gold stars. Rejections hadn’t affected my habit of getting the work done and out there, but they made me feel a little depressed.

At the starting line, I was completely done with the miasmic feeling of failure that hung over my head. I had to be in the running for the Emerging Writers Program and the only way I’d be considered is if I ran the race alongside everyone else. Shaky, I pulled my running shoes on.



With a pressing timeline and poor health, I couldn’t afford to entertain the notion of quitting. I had to ignore perfectionism and comparison and keep looking straight ahead to the finish line. I knew that if I glanced sideways, I would fall and not get up again.

Through migraines, low-grade fevers, chest pain and many other symptoms, I held onto perseverance with all I had. Perseverance was the rope I hung onto that dragged me toward the finish line. My beta-readers backed me up and pushed from behind.



I grazed my knees the last hundred metres but my sweaty, rope-burned hands were locked on perseverance.

Finally, after four long weeks, I found myself touching the finish line. By that stage, my body was protesting loudly and I could no longer ignore it.

I hit the submit button, let go of my perseverance rope and promptly fell in a messy heap of victory.



The experience illustrated to me yet again that perseverance is essential, regardless of your goals or what shape your difficulties take. Nobody breezes to the finish line. Nobody. No matter how unattainable a goal seems, or how giant your obstacles look, you will make it if you just hang onto perseverance.

Winning a place in the FAWWA Emerging Writers Program would be a dream come true. If I miss out, I’ll feel disappointed for a while but then I’ll realise it doesn’t matter because I know I did my absolute best with what I had. I ran the race and crawled over the finish line – I reached my goal. I’ll call myself a winner because I persevered until my entry was complete.

When I’m strong enough to get up and sprint again, I know perseverance will be there to steadfastly pull me to success. But for now, it’s time to switch gears after a month of bloody hard work and sickness. Now it’s time to get some rest so I can last the crazy writing journey marathon.





These days, saying you’re ‘OCD’ about something is common. I’ve heard mentally stable people say offhandedly that they’re ‘OCD’ about something more times than I can count and you probably have too. The phrase has become a thoughtless verbal trend.



Being detailed and particular about how you like a certain thing is completely different to suffering from Obsessive Compulsive Disorder (OCD).

Psychologists say that OCD should not be confused with idiosyncrasies and preferences. ‘OCD is often misunderstood as a disorder that simply means being overly detailed or perfectionistic.’ 

OCD often originates from an inability to emotionally process a difficult experience. It is not a choice but an utterly debilitating anxiety disorder. OCD is not a term to be used lightly, in casual conversation.



I had several emotionally difficult challenges the year I turned eight years old. My inability to cope with everything that was going on in my world led me to develop OCD.

It took me a long time to get ready for school each morning. I believed that my ponytail had to be perfect, my matching socks had to be exactly the same height and my shoelaces had to be the exact same length on each side – tied perfectly the same as my other shoe.

At school, my handwriting and colouring had to be perfect and so I wrote and coloured very slowly. I often had to start over again because I believed my work wasn’t good enough – I couldn’t handle even a shadow of imperfection.

After school, I’d sniff my hands to check for smell and then wash them to make sure they weren’t dirty, repeating the process as I did my homework, until it was time to have a bath that night.

I spent hours and hours with these obsessive thoughts and compulsive behaviours. They went around in a never-ending circle, day in, day out. I drove my family nuts.


‘…the invasive can kind of take over, crowding out all other thoughts until it’s the only one you’re able to have, the thought you’re perpetually either thinking or distracting yourself from.’ Turtles All the Way Down by John Green


Even as a child, I knew my thought spirals and compulsive behaviours weren’t normal but I couldn’t stop. I felt trapped. The unwanted thoughts about what I should do, even though I didn’t want to do them, kept coming. I was haunted by obsession.

My world made me anxious. I felt powerless. OCD put me in a cage where it was just me and the obsessions. It was a torturous kind of safety. If I didn’t achieve these obsessive perfections, I’d break down in a fit of frustration.



Year by year, OCD slowly loosened its hold on me. Perhaps because physical illness took over my life and there wasn’t much room for anything else. Or perhaps because I maladapted in another way by developing Borderline Personality Disorder.

Today, I technically don’t suffer from OCD because my behaviour is no longer compulsive but I still do, sometimes, have to fight off a barrage of OCD thoughts.

Many OCD sufferers aren’t so lucky and don’t manage to grow out of it. They live lives of almost constant mental torture.



I’m hopeful that with an increase in mental health awareness, the careless trend of people saying they’re ‘OCD’ about something might fizzle out.

Let’s not, in any way, belittle people with OCD. Their suffering is real. Let’s speak about OCD with the sensitivity and respect it deserves. I believe we owe OCD sufferers, at the very least, this one small courtesy.

Remember: ‘We all may have strange idiosyncrasies such as avoiding bath sponges, organizing our closet by colour and pattern, or refusing to touch the restroom door in public, but these habits should not be confused with obsessive-compulsive disorder.

Thank you for caring enough to read this post,

Jodie x


Letter to a Friend About Mental Illness

Dear Friend,

You’ve often said to me that nobody is normal and we all have our problems. I completely agree – and I appreciate your efforts of trying to make me feel acceptable – but I think that perhaps you don’t really understand.

It’s true that everyone has their issues; we’ve all experienced traumas; we’re all broken. What we share in common are our human natures and the whole range of human emotions. What we are less likely to share in common – diagnosed or not – is mental illness.

Someone who is sad may say they’re depressed when they have no clue what real depression is like. It is not sadness – it’s worse.

Someone who is particular might say they’re OCD about something when they have no real understanding of the brutality of the disorder. In its most destructive form, OCD is oppressive and relentless.

You lack motivation? Sure, everyone does but do you know that tight grip of depression that feels like 20kgs of weight strapped to your feet? You can’t move, no matter how hard you try.

Someone who is feeling stressed from having too much on their plate may not truly know what real sensory overwhelm feels like – that state where your anxious mind meets a barrage of overbearing stimulants. The result is internal chaos.

You say you feel anxious. Everyone experiences anxiety – true – but not everyone understands the extreme stress response that comes in the form of a panic attack. It is truly awful and can be extremely hard to prevent, even after all your best efforts.

Someone whose brain has checked out for the day due to busyness, may not know what real dissociation feels like – that state in which you lose all sense of yourself. In fact, you don’t even know you’ve ‘left’ and so have no idea when you’ll be ‘back’.

Someone who feels lonely for a spell maybe doesn’t understand the feelings of abandonment and despair that you have to deal with as a person with Borderline Personality Disorder (BPD).

These examples are just a few of the ‘not so ordinary’ issues I – and many others – have to deal with, on a regular basis.Whilst BPD, depression and anxiety don’t define who I am, they follow me everywhere. They are more than mere labels, simply because I have to live with them day in and day out. Relief is hard to get.

BPD, depression and anxiety – like all mental illnesses – are serious and can’t be equated with all manner of human nature and human experience. (Did you know that the most common reason why people engage in self-harm or attempt suicide is to escape unbearable emotional pain?)

So sure, no one is normal. Normal doesn’t exist. But one person’s ‘not normal’ is different to another person’s ‘not normal’. And mental illness is the most debilitating ‘not normal’ out there.

So now that you understand the difference between the things we share in common as humans and a few of the symptoms of mental illness, dear friend, please stop comparing me to everyone else and telling me that my suffering is no different.

Perhaps you will never fully understand, and that’s okay, but I’d really appreciate it if you continue to try and as you try, be careful not to dismiss the gravity of mental illness.

Love Jodie x


The Spoon Theory

I’d love for all of us to stop judging others on what they do and don’t achieve in life, whether they’re ‘normal’ or ill, or whether they’re ‘like us’ or not. Here’s why: we all carry a unique and limited number of ‘spoons’ to use each day. Let me explain.

The Spoon Theory is a genius analogy coined by Christine Miserandino.

The theory is especially relevant to me because I have a gut condition called Chronic Intestinal Pseudo Obstruction. This illness, along with depression, anxiety, a moderate pulmonary stenosis and an underactive thyroid, affects how much I can and can’t do on a daily basis.

The Spoon Theory is a fascinating, simple concept about the limit of physical resources a sick person has. By physical resources, I mean energy stores, muscular strength, the quality of sleep I’m able to get, and bodily malfunctions.

Anyone who sets out to understand the Spoon Theory will benefit from knowing about it, not just those with an illness or those who live with chronically ill people.


Time to read

I’ve shared the above two links, hoping you’ll read them now, before continuing with this post. Even if you consider yourself healthy and ‘normal’, please still look at them.


More than just a body

As well as the physical capacity of a person, the Spoon Theory can also be applied to a person’s mental and emotional reserves. It certainly applies to all three aspects for me, as I struggle daily to maintain homeostasis within my whole being.

In this age when depression is more widely and openly discussed, and there is greater public awareness about mental health issues, I think this is an important point to remember.


Spoon supply

Each day, week, month, brings with it a varied amount of spoon supplies. Life is ever changing and for me, there are rarely a reliable number of spoons at my disposal each day.

If I’ve had more sleep, I have more spoons to use. If my body is being less symptomatic, I have greater concentration and more energy. If my son has been well behaved, I have more mental space to be mindful and keep my depression in check (resulting in a lower likelihood of depressive ‘slumps’). This can also apply to people who are quite well.

So many elements in life use up one’s spoon stores – not just illness. Relationship issues, children, work and many other things take away from each person’s supply. Sometimes those ‘other things’ deplete a person’s spoon supply so much that it leaves them with no spoons to use for him- or her- self at the end of a day.


Effects of The Spoon Theory

Maybe, given my medical condition, I aspire to achieve too much, but I’m determined to experience as much as a motivated healthy person in this life. I’m ambitious in spirit but poor physical and mental health has always limited what dreams I can realistically accomplish.

Because of the Spoon Theory, I’m a lot more okay with my limited capacity than I used to be. Discovering the theory brought some freedom into my life. I was able to lower the lofty height of ‘the bar’ I’d always set for myself.

My loved ones have all read about the Spoon Theory and it’s really helped them to manage their expectations of me. This has resulted in a happier, more relaxed Jodie. The funny thing is, when I’m feeling so well supported, I can generally give more back.


Got a spoon?

And that’s why I’d love us to stop judging others based on what they do and don’t achieve in life, whether they’re ‘normal’ or ill, or whether they’re ‘like us’ or not.

Everyone has their own number of spoons. Everyone has their own capacities and weaknesses to face, and strengths to deal with life’s challenges.

Why don’t we start thinking about whether we have a spare spoon we can lend to someone (sick or healthy) who doesn’t have as many as they need?

Being given a spoon is one of the greatest gifts anyone could bestow upon me. Thank you to everyone who has ever given me one of their spoons. I’ll always be grateful.



The night of the alien

Once upon a time, in a hospital far away, there existed a 13-year-old girl whose life was surrounded by a sphere of mystery and desperation.

The girl’s name was Jodie. The girl was me.

I can’t remember all the details of my history, which is annoying. I’m guessing my memory is patchy because I had intense experiences, permeated by high levels of emotion.

I’ll try to recollect one especially peculiar scene for you…

This scene unfolded during a time when I was debilitated in hospital. My abnormal body had produced an abscess where a jejunostomy tube had been removed from my gut wall. Why did an abscess form? The answer is unknown.

I was lying, supine (as I often did) on my plastic mattress bed, watching TV. It was an average night on the teenager ward at Princess Margaret Hospital. I was reasonably happy because the dressing around my gut ‘hole’ had been fashioned by a skilled nurse. The dressing was secure, so stomach acid wasn’t burning my skin, as it so often did during this particular admission. It was a pretty ordinary hospital stay.

Then average changed and the ordinary got real weird. (Not that I wasn’t already familiar with all sorts of weird…)

Stomach acid began to seep under the expert dressing and sizzle away at my epidermis. The ostomy pouch secured over the hole (for drainage) puffed up with gas. I sensed impending doom.

When weird things happened to my body, as they did on semi-regular occasions, I felt astonished. But this time, I said, ‘Woaaaaah, check this out!’ to my mum who was sitting nearby.

We knew something was quite wrong when the pain started. Mum rushed off for a nurse.

The nurse, who tailed my mum back, loved grotesque human secretions. (Nurses are generally curious, fascinated creatures.) She took the ostomy pouch off. A foreign, disgusting smell filled the air.

What happened next was almost like the alien chest-bursting scene in the movie, Alien (or the rip-off version in Spaceballs). Funny thing was, I didn’t order the daily special.

What erupted out of my gut wasn’t an archetypal alien… But it was green, it was slimy and it was definitely disgusting. My adrenaline level soared. I stared at my tummy, grimacing, as if it were someone else’s bodily dysfunction that I was observing. It bubbled as it exited, like a creature moving of its own accord. The mass discharge happened in a matter of seconds.

Straight after the alien had slimed out of my gut hole, all covered in mucous like a baby – it burst.

The first thing the nurse said was, ‘Coooool!’ All I could say was, ‘FAR OUT!’ My body had produced this. It was surreal to see the abscess on the outside of me, after it had been causing so much trouble inside me.

What followed was a decent clean up effort and animated talk between medical staff. The best thing, after this episode was that I was free, for now, of physical pain. Finally, I had my jejunum back. Now, hydrochloric acid wouldn’t leak out, over my skin and torture me.

I may not have slept so well since The Night of the Alien.