supportive

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…