appreciation

TLC.

Indisposed and Undiagnosed has quietly had an overnight renovation.
We now have a cute little logo, and a site that is much easier to navigate your way through.
To experience the full effect of the changes, please take a peek on a laptop or computer!

I would like to thank my followers for your endless support and love.
I have received many emails (through my current darkest of times) describing me to be the voice for those who are unheard, hurting and also lost in illness of all kinds.

A Chronic Illness blog must shine a light on the positives and negatives.
In order to spread awareness, we must share an accurate account of our good and bad ordeals. They may be terrifying to write and read, they may also be incredibly depressing, but they are spreading awareness.

We are here, we are fighting, we are waiting, we want to be heard.

I am appreciative of your concern over my wellbeing, every comment I receive, every email I read.
I hope you continue to follow me on my journey.

May there be brighter days ahead for all of us

C, x

Hello, how are you?

Hello there!
It has almost been a month since I decided to take my little holiday from WordPress, so I thought I would pop in and say hello.
I appreciate all of your emails and kind wishes, and am in disbelief that I have still accumulated new followers without posting anything new.

I must admit though, I have considered taking down this site many times over the past few weeks. I have even regretted writing again and have wondered if it has caused me more harm than good to be raw and honest in communicating about my journey.
Many of you have emailed asking questions, which I thought I would quickly answer in the best way possible.

Did you get help from the Government/how did the meeting go?
I was lucky enough to get a very kind woman who explained that I am not allowed to apply for a Disability Pension as of yet, but she was more than happy to continue my current temporary payment, fortnightly, until early next year. It is not a Disability Payment, and it is not a large amount, but it is money nonetheless and I can put it straight towards my appointments.

The meeting itself went fine. She was very understanding, and didn’t feel the need to look at the folder I created (which kind of annoyed me because I put SO much effort into getting letters from Specialists and statements, results etc). We spoke briefly about my past job history, my immunity, my studies and symptoms and she was sympathetic towards this being a postviral condition. She also told me that if I am still unwell in January, I can have an extension.

How are you feeling?
I feel better than I did eight months ago.
The only setback I am currently having are rollovers of viruses. It is Winter here, and I seem to be getting the flu every fortnight. I recover for a week, and then get it again. Viruses unfortunately go straight to my stomach and destroy any consistency I have had with eating. Not to mention, it also further weakens me. I am also not allowed to take antibiotics or cold and flu medication so I am trying this au naturale system.

Apart from the neverending viruses, I have been better.
My nausea is only after eating, as opposed to every second of the day.
I have been able to eat three consistent meals per day.
I have been getting out more, little by little and am able to stand on my feet independently for longer. I still rely on help from others, and I get extremely tired quickly, but the dizziness is nowhere near as bad as before. I hope it remains this way.

Are you any closer to receiving more answers/what are you trying next?
My Specialist and I have agreed that we will probably never find a straight forward answer. I definitely have Gastroparesis, but it came back as merely mild. My symptoms have been quite severe, which brings us back to the theory of Post Viral. Every other test I have had has come back clear, and we have done them over and over again.
Which brings us to the conclusion that I need to focus my time on management rather than answers. I may never be the same again, but eventually, I will have to go back to work and “living” in the best way possible. So, all of my time and energy has been spent on trying to find my norm. I have simplified all of my Specialists:
Gastroenterologist for my Stomach.
Acupuncturist for my stomach, neck, and general wellbeing.
Osteopath for my neck.

What have you been doing with your time?
I have been trying to get out a little more than usual – to the shops, to parks, even for car rides. I have also been doing a lot around the house – getting my body used to movement. I have been watching reruns of Hart of Dixie and Pretty Little Liars (I need some trashy female drama to keep me sane), and spending a lot of time with my family.
I have also been cooking more often, and obviously attending my weekly appointments.

I know it doesn’t sound like a lot, but considering where I was eight months back, I actually feel slightly stronger.

Do you still find yourself having bad days?
Of course.
Although I have made improvements, I find myself in the same depressing slump I have been in in the past. I don’t think that feeling will ever subside. I still have days where I can’t get out of bed, and I am extremely frustrated with myself for making improvements and then falling behind. I still have days where I want to give up because I feel that life isn’t worth it. I am still struggling to cope with losing so many “friends” in a short space of time… when I really needed them.
I still crave the old life I had, and all that I am missing out on… but I am trying to cope in the best way possible. I don’t know if it is the right way, but what really is the “right” way of doing this?

Has anything new happened?
I have put on five kilograms, which is exciting. I hope I can keep the weight on.
I found a miracle oil called “Kwan Loong” from Singapore which temporarily numbs my neck from the throbbing pain. I have tried many heat activated products before, with no success, but this one works wonders. The main ingredients are Menthol, Lavender Oil and Eucalyptus. A few of the ingredients in it are probably not recommended for longterm use, but if you are using it sparingly and it brings you relief, then I don’t see a big problem.

I also recently reconnected with someone I haven’t spoken to in about four months. It was a bittersweet feeling.

I think that is all my brain has time for. I am currently quite dizzy and struggling to breathe through my nose, or swallow due to what feels like razorblades in my throat.
I hope you are all as well as can be and have found management, relief or even answers.

I haven’t decided if I will continue to write or remove this page. I am quite enjoying the time away from Social Media. It has also helped me immensely with my neck problems and dizziness… but when I know for certain, I will be sure to inform you.

Sending my love to those who are experiencing bad days, and know that you are in my thoughts!

C xx

Friendship in the face of Chronic Illness.

One thing that my Invisible/Chronic Illness has allowed me to see, is the world in a new perspective. My life is no longer about the petty problems I faced years ago, and the superficial crap. In spite of all of the symptoms and pain I must face each day, my time and energy is now purely spent on keeping my stress levels at a bare minimum, managing my symptoms and surrounding myself with supportive and understanding people.

Chronic/Invisible Illness is a funny subject. Once you announce that you are suffering, (or they hear along the grapevine) you are suddenly bombarded by people contacting you.

I refer to them as the Prodders, as they literally begin mentally/emotionally prodding you; questioning, encouraging, pushing, reminding, assisting, annoying, hating, etc.

I have put them into a relationship wheel will that comprises of four categories:

Permanent Prodder:
The friends who never really left to begin with.
They:
– contact you frequently
– try to understand your symptoms
– send positive encouragement
– convince you to keep fighting
– are loyal regardless of the situation
– offer to assist in any way possible
– pay you visits voluntarily
– preoccupy you when they know you need it
– don’t pass judgement
(They are the Keepers, and I can safely say that I only have four of them in my life)

Reappearing Prodder:
The ones who you haven’t spoken to in five years, and send you a message to let you know that they are suddenly thinking of you and are there for you. They are usually 85% of your Facebook friends. Look, I appreciate hearing from anyone, but with some people in this category, I often wonder if they really care? Or if it is just an act of kindness out of guilt. They contact you in case the illness gets the better of you, and they simply need to clear their conscience of all that happened in the past. If it is someone you had a falling out with/drifted from, Illness makes you realise how petty it all was to begin with, and I would like to think that this would be the perfect chance to make amends.
I don’t have to feel guilty anymore because I messaged her saying, “I hope you are okay”, “So sorry to hear of your struggles”, “I’m here if you need anything”.
But are you really there for me? Or will I most likely never hear from you again?

Occasional Prodder:
The ones who contact you with a message that makes you question why you were friends with them to begin with. They are the ones you went to school with, spent every day at work with for a few years, the friends you usually had the most fun with. They are usually the ones who send you the half-hearted messages – the memes, random photos, rants about their ‘oh-so-big’ problems in life. They whinge about their fulltime job, or going out every weekend and being ‘oh-so-tired’. They have all of the time in the world to speak about themselves, but not at one point do they ask you how you have been/how you are/if they can be of any assistance. It’s too much of an effort for them. And don’t bother trying to talk about yourself, because I’ve tried that, and somehow they revert the conversation back to themselves.

Disappearing Prodder:
In my case, I’ve had a few of these. One in particular. We spoke every day at a routine time. They understood me in a way that nobody else could.
They are the ones who swore that they would be there through anything. The ones you have probably helped more times than you can count. They probably know you are sick and have been along for most of the ride, and then suddenly, you don’t hear from them anymore. It’s as though your illness has hit them all at once, and it is more pressure for them, than it is for you. They can’t find thirty seconds in their day to reach out to you, and they most certainly don’t have the patience to listen to you talk about your illness or feelings anymore. They can’t put aside any differences you may have, and simply be there anymore. They don’t know how to handle it, and disappear.

If you don’t know if your friend is alive or not; if you don’t remember the last time you heard from them; if you know they are going through a rough time, NOW is probably the time to send that message or make that call. Its not hard. I don’t need you to be here every day.

I don’t need you to feed me, dress me, take me anywhere (unless you offer). I don’t want to have an entire conversation based on my feelings and symptoms. All I’m asking for here is a little consideration and support.

If you can’t be there for me at my worst point, and if you don’t think I’m worth staying in contact with simply because I am ill, then why should I want anything to do with you?
Whether I’m ill or not?

Because, I have a very big heart.

I struggle to find a balance between forgiving people and realising how much they have hurt me by choosing to leave.  I find myself “settling” and allowing these people to crawl back into my life – instead of telling them that what they have done is NOT okay.
You should be there for someone if they are strapped into a rollercoaster like this one!

I truly hope that something awful like this illness doesn’t creep up and surprise you one day, because you will unfortunately be faced with the same problems as I am. Unlike you, I am the type of person who will probably still offer you support and guidance. Shame on me, hey?

This illness is 90% a burden, and 10% a blessing, because it has taught me to grow up, to see how small the problems I used to face really were, and to realise who my true supporters are.

To quote the finest Miss Monroe:
I’m selfish, impatient, and a little insecure. I make mistakes, I’m out of control, and at times hard to handle. But, if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.

You : your worst critic.

If dealing with the symptoms of Chronic Illness wasn’t enough, we also have to deal with the physical changes in our bodies, and having to face them mentally.
With detiorated health and immunity, comes physical changes that we have no control over. For example, I have lost weight at a ridiculously fast rate so I’m currently all skin and bones, my hair is falling out in clumps, my skin has turned to sandpaper and all of the colour has drawn from my face and turned me into a ghost. I look in the mirror and see someone who is sick, but I honestly cannot see the change in my weight. Others, can and they aren’t afraid to point out that I have a ‘problem’. They aren’t afraid to say,
‘wow you look shocking today’
‘Have you seen your um… face?’
‘What is happening with your hair?!’
‘You’ve lost SO MUCH WEIGHT’

I know that people aren’t doing this intentionally. They are stating facts, and probably don’t really know what else to say. So, um, maybe just don’t say anything at all?
Because yes, it bothers me, and I have no control over it.

If you read my post from earlier on in the week – Parents in the Shadow of Illness – you would have read that I was sent to an Adolescent Clinic in my earlier years. Sufferers of Anorexia, Bulimia and Body Dysmorphia were sent to this clinic too, so I was exposed (at a very young age) to this disease upclose and personal.
I didn’t know exactly how each of these teenagers felt, but what I understood from my time there was that they looked in the mirror and saw a completely different image to what was actually reflecting them.
I saw them hide behind their oversized jumpers and baggy tracksuit pants, and then further behind a trench-coat, because they weren’t happy with themselves.

I, myself, had been diagnosed with ‘Borderline Anorexia’. I remember asking myself, what the hell is the difference between borderline and straight out anorexic? We’re all underweight.
Why further break us down into smaller stereotyped categories?
Someone then told me that my illness was causing me to lose weight, and these teenagers were ‘doing it to themselves’.
No. It is not something that you ‘do to yourself’.
It’s a mental illness, or some people like me had no control over it as it was an alternate issue causing the weight-loss. It didn’t matter because it led to the same thing in the end; being underweight, unhealthy and judged.

When it comes to Body Image in general, why is it that we always believe our worst reviews? We can never accept a compliment, and when someone has the nerve to criticise our appearance, we let that cloud our mind and eat away at our thoughts.
There is always something, with EVERYONE, regardless of gender or social status.

Why do we become obsessed with wanting to be like someone else? As skinny as the celebrities, as tall as the models on runways, as attractive as that guy/girl you just saw on the train? (and here’s another thing, don’t gender discriminate. Guys suffer too). You’re looking at one girl, wishing you had her waist. She’s looking at another girl, wishing she had her breasts. That girl is looking at a guy, wishing she had his hair. And that guy is looking at another guy, wishing he had his body. It’s an endless cycle.

Isn’t there something beautiful in being DIFFERENT?
Imagine a world where we all looked exactly the same – that there was a median for men and women. Yes, there would be nothing to compare ourselves to, and no individuality! We would all blend in and there is no fun in that, is there?

There’s always something to complain about.
We wish our teeth were brighter.
We wish our thighs were skinnier.
We wish we had less spots.
We wish we were taller, shorter.
We wish we were curvier.
We want smaller breasts.
We want larger breasts.
We want less hair, more hair.
We want to be darker.
We want ‘natural’ skin, yet we use more makeup.
We want to look ‘beautiful’. What is beautiful, really?

I think that the true definition of ‘beautiful’ is being able to completely accept yourself with all of your flaws and imperfections.
To be able to look in the mirror, and PAST all of the negativity, and be proud of who we are, where we come from.
Sure, it’s great if you want to work on yourself and create a better you, but don’t interpret that as losing yourself in creating someone else.

As I said above, this illness has made my own personal view of my body and beauty, pretty harsh. Sure, I have the occasional day once every few months where I have a family event, slap on some make up and try to look ‘pretty’, but that’s rare and it doesn’t mean that I feel good on the inside.
I still cry every day because I don’t look the same as I used to. I cry because I feel unattractive. I cry because I can’t fit into my favourite clothes anymore. I cry because my body is working against me.

I am like you, my worst critic.

So here I am, flaws and all, sharing with you that it is PERFECTLY OKAY to not be someone else’s definition of perfect.
That we are beautiful with our illness, and without.
Bad Day vs. Not so Bad Day
We need to stop hating ourselves, and start loving ourselves.
You, are not alone X

Parents in the shadow of illness.

Thank you for sending through your ideas for my next post.
It was extremely hard to choose from, until I came across a response from a mother, and I knew in my heart that this was the one I had to write.
We hear stories of the teenagers and children going through Chronic Illness, Depression and Anxiety, but rarely do we hear from behind the scenes.
So, thank you to https://perfectlyimperfect05.wordpress.com/ for choosing today. I will try my best to do this topic justice.
Please take the time to read her inspirational work.


The first time I was seriously ill and hospitalised, I was about eleven or twelve. I had been complaining of stomach cramping for weeks, nausea and bloating. My parents just assumed it was a mild stomach bug. They pushed it aside. I woke up one night, though, on the floor screaming and my parents rushed me to the emergency room immediately. 
I remember the night clearly. The nurse unveiled the curtain and whispered to my parents, ‘the doctor would like to have a chat to your daughter alone’. I hated hospitals back in the days, just like any other child. They were white, gloomy and terrifying. My parents left the room, and the doctor came in. There was no time for introductions, he just cut to the chase.
“Are you being neglected by your parents?’
’
“Are you being starved?’
”
“Are you being abused physically or emotionally?’
’
My answer was obviously no, but he didn’t believe me, nor did he believe my parents. What we learned later on was that I suffered from severe Irritable Bowel Syndrome, and I was losing weight drastically because my stomach and bowels were holding onto food for long periods of time. I didn’t feel the need to eat.
And, somehow, I ended up in an Adolescent Clinic for children and teenagers who suffered from emotional or physical abuse, with a diagnosis of ‘Borderline Anorexia’. Every meeting I had with my counsellor, I was interrogated about my parents and brainwashed into believing that I was mentally ‘doing this to myself’ or that they were doing it to me. 
And after every visit, I ran back to my parents and told them everything.
Obviously, we didn’t stick around there for long.

I remember speaking to Mum about it a few years later, and asking her if she remembered, and she said it was the worst moment of her life. She couldn’t understand how someone would believe that she would want to hurt me. She said that the most hurtful thing is when someone attacks you for being a supposed bad parent.

When I had Glandular Fever, I remember my Mum feeling so helpless – my symptoms were so severe. I just lay in bed every day and night, shaking with high temperatures and there was nothing anybody could do to help me.
When I was diagnosed with Grade II Oesophagitis, they were broke just trying to keep up with my medical bills, trial medication and diet change.
Then there were the Shingles, twice, which left me bedridden once again. My neck glands had swelled to the size of golfballs, and I had excruciating nerve pain. My Dad tried to make me laugh as much as he could.
When I had my Laparoscopy last year, my body didn’t heal as quickly as it did the first time. She let me sleep in her bed for weeks, as night after night I screamed in pain. She would stay awake with me, and for each time I told her I couldn’t do this anymore, she told me that I could.

So, with a few brief memories there, you would already know that growing up, I have unfortunately always suffered from a low immunity and had DIAGNOSED illnesses. I often wondered if they regretted having me, because I seemed to cause an array of problems for them.
Late last year though, my health rapidly deteriorated. I was so sick, and off work for months at a time and not ONE specialist could find anything wrong with me. I was complaining of vertigo, not being able to eat, nausea, insomnia. I was weak at work and catching virus, after virus. My parents took me to appointment after appointment, and sat with me as every person came back and said ‘your results are all clear’.

There was one night where I cried so hard about feeling like a failure and that nobody (not even my own parents) believed me, that I gave myself one serious blood nose.
My partner was with me at the time, and there was blood all over my bed, his jumper and the floor. I held my hands over my nose, but the blood had trickled down my chin and onto the floor. I had created a small blood spilled pathway from my bed all of the way to the bathroom. It resembled a murder scene. My parents came home in the midst of me crying over a sink of running water, blood stained handprint on the mirror and basin, and my partner trying to soak up my blood from the carpet with wet paper towels. I could hear them whispering as I cried. She just won’t stop crying, he told my Mum. I don’t know what to do. My Mum has never been good with blood, so I clearly remember my father entering the bathroom with a cold flannel and he put it on the back of my neck. I (stupidly) tried to breathe through my nose, and a large blood clot flew straight up my nasal passage and into the back of my throat, making me dry retch. I (again, stupidly) opened my eyes and there in the sink was the same blood clot.
My Dad passed me tissues and patted me on the back. He left and returned with an icepack for my neck, and then went to my Mum and Jason, and I looked into the mirror. My face was covered in blood, which had dried at the corners of my lips and the tip of my nose. My Dad had never been so… hands on with me before. I felt like a baby bird with a broken wing.
I knew it was coming. They sat me down for ‘the talk’.
I had had their support for years, but today was different. I could feel it.
“You need to make lifestyle changes”, they told me.
“How do we treat something that isn’t there”
“We don’t know what to do”
“How do we help you?”
“Eat. Just please eat more. You have to eat more”
“We can’t see you like this anymore”
And just like that, they had reached their breaking point.
Their faith in me had diminished and it was only then that I realised how much suffering they had gone through and how hurt they were. They had been there for me every step of the way. They had mostly paid for every appointment, every medication, waited through every surgery, procedure and test. They had sat beside me and experienced the same sickness in the pit of my stomach when each practitioner told me they had no idea what was wrong with me. They dragged me along in shopping centres, because I was too dizzy to walk. They watched me lose seven kgs in less than a month. They watched me lose my dream job, and they saw that my usual confidence had completely disappeared. They cleaned up my blood off of the floor, and face. They drove me everywhere, and took countless days off of fulltime work to accommodate for me; whether it was an anxiety attack, an appointment, a day where I needed someone to help me at home.

I was angry with myself.
I had never once asked how they felt through this.
I had never truly appreciated their help, or guidance, until now.
I realised that we all needed to speak about everything – the symptoms, the feelings.
They were worried that they were going to have to bury me.
I had to make sure they knew this illness was serious, but that I wasn’t doing it intentionally.

And from that day forth, we were all on the same page.
We speak about everything now; every appointment, every single thing that each Specialist suggests. We discuss what medications to trial/not trial. We have an Appointment Calendar so we can work around each other. My Mum has trialled some of the natural therapies with me, and my Dad has actually networked trying to find new trial possibilities. They are continuously checking up on me during the day, and are always telling me not to stress because it ‘makes things worse’.
I inform them of every appointment, and we have received help from family and friends so that I’m not always relying on my parents. I have learnt to cope with the symptoms more independently, so on weekends, they have time to themselves and go on day trips and spend more time together alone. I’m not saying that our lives are even close to normal – because they aren’t. I am still struggling, as I know they are; having to watch me go through this. But things are much better now.
We try not to think of the future much, but if it comes up in conversation, my Dad always says, ‘You won’t be like this forever. Medicine is always growing and one day someone will be able to diagnose you or help you manage this”

I guess we have to hold onto something.

To the parents out there – I am in awe of you and forever will be.
I know now how hard it is for you to watch your child experience something and not have the ability to free them from the pain. Don’t give up hope. Talk to your children. Don’t give up on them, but most importantly, don’t lose yourself in the illness either. make time for yourself and your partner and communicate.

To the sufferers – you can sit back and write as many blogs as you like about feeling alone in your suffering and how your parents don’t understand.
Maybe you need to tell them more than once.
Some parents are in denial – not because they don’t believe you – but because they don’t want their beautiful child to have a problem, let alone a serious one.
Please, try.
And if that doesn’t work, try again.

When life doesn’t go to plan.

You could say I’ve always pushed myself to achieve the best.

I grew up knowing that I would be a writer. I wrote, I won competitions, I joined writing clubs, I was published, I studied Professional Writing for two years at University. I had a plan. Study, publish a novel, marry by 25 and have kids by 30.
But then, I graduated, and was not satisfied. I didn’t think anyone would be interested in reading my stories. I lost my writing spark, so, like any normal person, I took a temporary gap to ‘find myself’.
I worked fulltime, saved my money (which I was yet to know would be much needed in the future) and at one point, worked two jobs and studied.

I was so hard on myself for not wanting to write anymore. That was my plan, and I didn’t adjust well to change. My heart just wasn’t in it anymore.
I hated working fulltime in a fastfood outlet because I knew I was meant to achieve more than making burgers and cleaning tables (I learnt so much from working in that industry).
So, I decided to study Childcare. I worked when I was sick, I studied when I was exhausted and I still managed to fit a relationship and friends into my perfect little plan.

I was on top of the world once I started working in Childcare fulltime. I absolutely loved my job and I was furthering my studies to become a fully qualified ‘Room Leader’ (as opposed to an assistant). Children, are wonderful creatures and they filled my heart with a warmness unlike no other.

My body, though, did not adjust to the germ-infested environment of Childcare. My immunity was shockingly low, despite every vitamin and suggestion I tried. I caught every little virus these beautiful children had. I didn’t mind.

The one virus that I caught that changed everything completely, was Shingles. If you’ve had them before, you know exactly what I mean. They are unlike any pain you’ve ever felt before. And, I caught it twice (which is apparently rare). I was off work for months at a time, then I pushed myself to return and would have a few good weeks, then I’d get sick again and the cycle would repeat. It was endless. My immunity just… disappeared.

By December, I had wasted away to nothing.
I would go for days without eating, and naturally I was severely underweight. My symptoms had worsened, and I seemed to have more problems than to begin with. No doctor knew why I was so sick.
I began to suffer from this neverending vertigo and gastrointestinal problems, which forced me to quit my job entirely. Unfortunately, my studies were directly linked to my job, and with only one unit left before I graduated – I had to give that up too. I was absolutely devastated. One tiny observational unit which entitled me to be in a centre at the time.
December is mostly a blur of me being bedridden, nauseated and extremely depressed.

I blamed myself.
I blamed my body for not being able to fight back.
I pushed myself too hard.
I worked too hard.
I stressed too much.
I never took ‘breaks’ or ‘relaxed’.
To go from having a plan, to not having anything at all… it’s an extremely hard thing to adjust to… to be stuck at home, not being able to do ANYTHING.

I’m STILL adjusting.

I was the type of person who was always early rather than late, had to-do lists for every task imaginable, made timelines and had a calendar in my room, on my phone and in a diary. I had dreams and ideas of what I wanted and where I wanted to be.

My only current source of optimism is that I am still young. If I’m out sick for one or two years more, I still have time to pick up where I left off. I need to find some sort of positiveness in all of this.
I can’t sit here and cry about it anymore (and trust me, I’ve cried for hours at end, and so hard that I gave myself nosebleeds). All of that energy crying, could be spent on healing. I have to have hope, even if it means clutching at straws.
I try to steer clear from talking about my longterm future, as it makes me upset to think about.
I have given myself little goals to achieve, like writing this blog, and trying different things to get some sort of relief for my symptoms.
I still have dreams – things I never got to experience – travelling the world, publishing a novel, buying a house, eating at a 5star restaurant, sleeping in a tent… You don’t realise how much you missed, until you’re unable to do it.

I’m not so hard on myself anymore, and you shouldn’t be either.
You can’t be. It isn’t your fault you got sick, and it isn’t your fault that you are struggling to beat it or find relief.
‘Plans’ don’t always go to plan.
My body obviously needs this time off to rest.
I have no choice but to listen to it now.

What you shouldn’t say to someone who is chronically ill

10. “It’s just a bad day”
Um, no. A bad day is when you burn your toast, miss your train, get a flat tyre, spill coffee all over your white shirt, get gum on the bottom of your favourite shoe, etc.
A bad day usually lasts one day, or a few days at maximum.
This illness is not a bad day.
It’s my EVERY day.

9. “Have you tried…” // “You should try…”
I have tried 90% of the things you are just about to suggest.
I REALLY appreciate the thought, but the only thing I will be trying will be anything my Doctor or Specialist prescribes me.
I don’t want to try any herbal remedies that have been passed down generations and help you with your Gastro bug.
If you have not gone through this, then please, please don’t recommend that I try anything. I know what my body can tolerate. Just let me handle that.
Maybe ask me what I am trialling/what is next?

8. “Come out with me and you’ll feel so much better”
Um, despite what you believe, that is a no.
Again, I appreciate the thought of you trying to distract me, but I am sick.
Do you want to go out when you have gastro? or the stomach flu?
Um, no.
If I go out with you, I want to feel good. I want to be able to chat to you over a lovely meal, have a laugh and enjoy myself. I don’t want to have to link arms with you because I’m extremely dizzy, and unbalanced. I don’t want to feel nausea half way through our talk and run to a bathroom.
It’s a little hard when my symptoms are this severe.
When I feel better, we can go on a trip around the world.
But for the time being, how about you come around for a tea, or a visit? I would really appreciate it.

7. “At least you don’t have…”
Is that statement meant to make anyone feel better?
Am I meant to consider myself lucky?
Not sure about my other sufferers out there, but that statement makes me feel worse because I don’t know what is attacking my body.
I would rather have a diagnosis, than be in the dark about it.

6. “You need to stop being so negative”
I am most likely negative BECAUSE of the illness?
When something consumes you for so long, you have every right to have negative thoughts/moments. You are literally housebound, jobless, depressed and ill every single day. Would YOU be happy every day?
I could force myself to think positively every single moment of every day, but it doesn’t make the illness disappear, understand?

5. “You got this because…”
Most likely because I overworked myself, had a weak immune system and worked in a field surrounded by germs – but then again, I don’t even know why.
NOT because I don’t exercise frequently.
NOT because I have normal arguments with my partner.
NOT because I chose to work instead of going out and partying.
NOT because I don’t eat healthy (btw I do eat healthy)
Please, save your breath on trying to play Doctor and make me feel shittier than I already do. You have no idea why or how I got this, and we’d all appreciate it if you just kept your opinions to yourself.

4. “So, what’s wrong again?” // “You’re still sick?”
If you weren’t listening the first time around, I’m not wasting my breath telling you again. I don’t have the time, patience or energy.
And yes, I’m still sick. You would probably know that if you listened the first time I told you, or if you had more of an understanding of Chronic Illnesses.
There’s this thing called Google – heard of it?
Do some research.

3. “You’re just exaggerating/making excuses/want attention”
If I had a dollar for every time I have heard this, I would be rich.
I also love how most of the time, this statement is used behind my back.
Why would someone leave their dream job, stop studying, stop driving, spend all of their time at specialist appointments, feed my body countless trial drugs, and create pain and nausea and dizziness?
Walk a mile in our shoes, please, take them.
Get back to me in thirty minutes and tell me how you feel (because you won’t last any longer than that, I assure you).
I don’t know why someone would exaggerate symptoms like this just for attention.
My illness is not an EXCUSE. It’s an illness. Full stop.
Yeah, I want attention. It’s called SUPPORT and ANSWERS.
Maybe instead of spreading negative energy, you should check in on me once in a while and show your caring side.

2. “But, you don’t look sick”
Yes, I might not look sick today, but it doesn’t mean that I don’t feel sick.
I might be very good at hiding my symptoms (on the not-so-bad days).
You can’t see nausea or vertigo.
You can’t see digestive problems or abdominal cramping.
But I can assure you that I feel it.

1. “It’s all in your head” (my all-time favourite)
The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).

Things you CAN do for someone with an invisible illness:
– Ask how they are feeling and begin to recognise their symptoms.
Ask questions if you want to know more.

– If you want to buy a gift, ask if there is anything they NEED.
We don’t get out much. Sometimes we need little things like toothpaste or gum or milk.

– Visit them!
It’ll usually have to be a short visit, because we need our rest, but I want to hear about who you are dating, what you ate yesterday, how studying is going etc etc.


– Be supportive! There’s nothing worse than having to face all of this alone. Just tell us you are there to listen – most of the time we don’t even want a response. We just need to get our feelings out…