chronicillness

#soulswithastory

A few weeks ago I was approached by an incredible woman who created a group to highlight the unheard (and often misjudged) stories of worldwide sufferers of Chronic Illnesses and unexpected life obstacles.
Each subject differs between the type of problems faced, but we are each faced with a hardship and are united by one image – the window to our souls.
It was an absolute honour to be asked to share my personal story, and I have been moved to tears by the stories of others.

Campaigns/projects like these make me thankful for being apart of such an understanding community, and remind me of the inner strength we each have, but often forget, during the roughest of days.

Please give them a follow on Instagram at @soulswithastory and have a read of the other warriors who you might not pick from a crowd đź’š

My story can be read below and you can keep up to date with my post-procedure updates via my Instagram Account @cassandrareitano

Cass Reitano’s Story: But, you don’t look sick!

C xo

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.

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

Dear Healthy People,

I’d like to begin by saying that not being able to work due to illness is no walk in the park. I worked and studied fulltime prior to getting ill, you know. I was never one to take sick days unless I had something horribly contagious.

I would much rather be able to come home and say “I am so tired from working today”, rather than wake up and go to sleep with the thoughts, “I’m tired of being sick, poor and absolutely useless”.

I don’t appreciate the rolling of eyes when I tell you I am receiving a government payment. Do you think that I enjoyed grovelling at the feet of the Government, to earn in a fortnight, half of what I earnt during my past fulltime job?
And believe me when I say that they didn’t just hand over the measly income to me. I had to fight for it. I had to print off every test result I’ve had over the past eight months, and get professional letters written from every Specialist I am currently seeing. And, these letters didn’t say “Cass is quite ill and unable to work. Please give her money”. They were detailed, some more than three pages, explaining every symptom I have and how it effects my ability to be mobile.
And where does this money go? You won’t see me spending it on a new wardrobe, or eating lavish meals. I pay for medication, appointments and tests.

I find the question, “What do you do all day?” incredibly offensive.
I look after myself because I am in pain majority of the day.
Yes, I sleep, because I am exhausted from feeling nauseous and aches throughout my body.
Please don’t think that I have a beauty sleep of ten straight hours. I usually go to sleep and wake up every two hours from a nausea spell or stomach cramping.
I am also in and out of appointments and tests. I am constantly trying new medications, struggling to eat. Eating for you is normal, natural. What if you simply… couldn’t anymore? What if your stomach refused to digest any food you put into it, and punished you with constant nausea and a weak body?

Whilst you’re worrying about what dress to wear for tonight, or where you are going to on a date,
I am stressing over the menu being appropriate for my stomach, and trying not to vomit in front of anyone.

I wish I could walk, drive and catch transport independently, but I can’t at the moment so please don’t look at me up and down when you see me linking arms with my father, my mother or my friends.
If your world was constantly spinning, you’d want something to hold onto too.

The most hurtful thing about being ill, is the loneliness.
I appreciate you saying, “If you feel better, come out with us tonight”, but I’m flat out going to say no, because firstly) my illness is chronic and doesn’t result in me feeling “better” because I cannot get “better”. Secondly) I might not feel comfortable being in a social environment with my symptoms.
What happened to home visits and chats over coffee or tea? Too boring, I guess.

I also don’t appreciate it when you tell me to do things.
For example, “Get up and go to work, you’ll feel better”
“If you don’t think about the pain, it goes away”
“Just come out for an hour”
It’s not as easy as just doing these things.
I have to take into consideration my pain, my other looming symptoms, and obviously my medication and strength.
An hour for you is simple, an hour for me feels more like five hours.

I know that you are busy with work, study and your new partner. You probably cannot imagine what it is like to have something like this swoop into your life and steal your health and independence from you. You probably think that you don’t have time to fit anything else into your schedule.
So, try and understand where I am coming from when I say that it would mean the world to me to hear from you once in a while, and not once for my birthday with a cheap “hope you feel good” at the end of your post.
Call me for five minutes.
Send me a Facebook/text message that shows a real interest in how I am feeling, instead of a “hey”.
Come over for half an hour.

I cannot tell you how much it would mean to me.

Whilst you are achieving your dreams and falling in love, travelling the world and having you-time, I am stuck here with this illness and it is depressing.
It is really depressing, and incredibly lonely.
I am not asking for money, a meal, a gift.
I mostly just want someone to talk to sometimes. Anything else is a bonus.

I’d like to think that if anything happened to you, something of this magnitude, I would do whatever I could to brighten your day, no matter how busy I was. Now that I know what this feels like, I am incredibly understanding.

Maybe that’s what it takes.
Maybe you won’t ever understand.
But, I wish you would try to. A little bit of consideration goes a long way.

Finishing off for the night, please don’t take your health for granted.
Don’t abuse it, because you could wake up one day like me, with an upside down world and no control over it.

You don’t know how lucky you are.

From, Me.

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…