invisibleillness

#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

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Illness Army: “The Never-ending Journey”

PLEASE take the time to read this piece.
I promise you will not regret it. I applaud Joshua for being brave enough to write this. It shows great mental strength considering all he has been through.
I hope that by sharing this piece, it helps others who have experienced similar circumstances. We can still find love through our illness, and mental struggles.

If you enjoyed this piece, or would like to contact the author please visit his blog.

If you would like to submit your story to Illness Army, please check out our Submissions Guidelines Page. You can also contact me through our Instagram and Facebook account. I look forward to hearing from you.

I don’t know how to start this story, nor any idea for an ending, but we’ll get there. Everything takes time and patience.
But in all honesty, “everything” takes a lot more than time and patience. Heartache, pain, suffering, and loss are also a big component of anything you experience in life. After that, it just comes down to how you cope with those various elements.
For myself, it was always losing my fears in music and writing my thoughts down in a journal. I’m quite convinced that it’s saved my life – probably on more than one occasion. The funny thing is that I don’t write much anymore and I believe I know the reason.
Ever since I was five years old, I’ve had crushes on girls, while also wondering what my life would amount to – where I’d be, who I’d be with, if I’d be married – and I’ve gotten it all wrong. Why? Because I thought that I had to be like my parent’s – not in the sense of what they did, but when.
When I get married, when I get a job, when I get a car. I think most people do this considering your parent’s are your first teachers about how the world works, but I took it in a literal sense. Then, as my grade school years enveloped, I realized most people started having jobs and relationships and getting around independently – not me.
But my biggest concern was relationships. I always envisioned being married or – at the very least – having a girlfriend like my friend CJ’s brother did at the age of 16. Again, I took things to a literal tee – even at the age of 5. One of my closest friends gave me the best advice I’ll ever receive a few years back. We’d just gotten back to my house after a day out together when I told her I was sad and scared that she was leaving for school in Chicago. “Although change is scary, it can be a good thing,” she said. I hear those words every time I’m afraid of a changing situation in my life now, and I couldn’t thank her enough.
Caroline will always hold a special place in my heart, and the three years following her departure were tormenting and soul-stifling. But sleepless nights over her and sleepless nights over what ensued after those three years were incomparably more painful.
Enter a woman who we’ll call – um – Megan. Megan was a friend who betrayed the trust of myself and others to the likes of which shall never be healed. Then again, when you seduce the broken spirit of a depressed, anxiety ridden 20-year-old at the age of 35, what left is there to trust?
“A moment of passion and blindness was bestowed upon me only hours ago,” I wrote of the situation. “What of the repercussions? What of the repercussions? Have I sold my soul in this dangerously beautiful act? I have my demons, however, one has left me forever.” At this point in my life, I felt lonely and afraid of love – undesired mentally, physically, sexually – and I guess that’s what happens when you have a physical disability such as Cerebral Palsy.
At the time, my friends didn’t even know how to respond to the benign scenario. Some told me to accept it and move on. Others thought it seemed enjoyable. What followed the months after that night were feelings of guilt and sorrow, pain and suffering, insanity and malice. I’d cry myself to sleep numerous times a week wishing for someone to save me, while having flashbacks of her legs around my waist, her breathing – her hands pulling the hair on the back of my head – that kiss on my neck that overtook my fears at that moment and turned it into blind passion.
I whispered for her to follow me to which we found ourselves at a point of no return. I asked if she was clean, to which she nodded in confirmation. I didn’t have protection, and I didn’t bother to ask. I didn’t know how to say no, or even ask if she had any, so I let her straddle herself atop my lap as she thrusted her hips and removed her shirt.
And to think that this moment started hours earlier with her sitting inches from me closing her knees around my leg and giggling at every word I spoke. Although I know one thing’s for certain: you never forget your first. It all still feels like as if it were a dream – a concoction of a teenage boy’s ultimate fantasy – only to be acted out in reality, without all of the “accomplished feelings” and high-fives from your bros. I think I always knew something was going to happen that night – she was flirting like a high-school girl with an engorged crush on the dark, mysterious guy who always sat alone at lunch. Only, she was no school girl, and I don’t eat lunch. She brought out my fears and hopes all in an equal fashion. She enveloped my desire to feel normal – and normal I had felt – up until the point where my sudden attack of conscious decided to guilt me into fault for what ensued between two morbidly, sad lovers.
So, as any story goes, now what?
I managed to graduate from my community college and ended up at my state university four months later – to which I withdrew medically from my only semester.
I met with a counselor named Lisa for every week during that semester. Megan was the source of my fear, my worries. Walking around campus feeling isolated from society, from friends and family and having no self worth, make life pretty unlivable. I hated Megan. She took something from me I still can’t get back: losing myself to someone who’s in love with me as much as I am with them.
I felt unwanted by everyone and everything. I felt like a freak undeserving of love and affection because of my disability. One day, Lisa asked me if I were a woman and Megan was a man, would that change the meaning.of what happened between us. I said maybe, but I really meant yes. I went through with my actions that night because I was too afraid to say “No.” I thought she’d judge me, too, if I didn’t give in to her advances.
In an odd twist of fate however, that night’s allowed me to reconnect with others and with myself. Fast forward a year after I withdrew, and I met a girl online named Anette. Psychiatry has become my best friend, and I understand my importance to others now. Anette has become my saving grace and without her love, I’d be a body with no shadow.
Anette will be here with me next month for a week and four days. We’ve both said that it’s going to be the best time of our lives, and I can’t wait to hold her hand and feel her lips pressed against mine so that I may finally be free of the torment that Megan caused – including the torment my broken mind and heart caused me my entire life.

So I Succumb.

There were a few days of peace,
or maybe I had mistaken Your silence for my happiness.
But then you spoke again,
Reminding me that I am carrying the weight
of another body.
Having You chained to me,
dragging You along.
Time and days of the week,
just blend into one giant stream of nothing.
There’s a heaviness in my chest,
a haze of brain fog,
clouding my mind.
You constantly have a negative response to everything I think or voice,
until eventually,
Your responses become mine.
We are always walking in darkness,
never in light.
I try to shake free,
but can’t.
I want to find the way out,
but can’t remember which way.
I feel nothing,
and everything at the same time.
I am drowning,
but everyone is staring at me,
Watching me breathe.
I am crying for help,
to a sea of the deaf.
I am gasping for air,
as You pull me down further.
I must escape,
but You won’t let me.
Your weight is too strong for me,
So I succumb.

The Pitstop Before The End.

I had the WORST experience I have ever had with a Specialist yesterday.
Chronic Illness brings one of two Specialists:
the nurturing, and the non-nurturing.
He was definitely non-nurturing. An older male who looked at me and saw a child who was “trying to make up excuses”.
He began his belittling speech, and I said absolutely nothing because I am completely iver this rollercoaster. I am numb.

“I expect you to be back at work in five weeks”

“I just came back from a trip to Africa, and people over there would give anything to have jobs opportunities like we do”

“You need to toughen up and stop running from work”

“The longer you prolong this, the worse it will be”

“You are the reason behind your depressed feeling”

“Your symptoms will ease when you return to work”

“I will be emailing a report to your doctors in regards to you not needing a Government Payment Application”

Straight after that appointment, I had my first Government appointment to plan for my application for the Disability Payment. In the first week of July, I am booked in to meet with a Government Employed Doctor and an Employment Officer, who will decide how many hours of work I am able to do a week.
If I wish to fight this, and go on to say that I am unable to work at all, I have to present my own personal Medical Bible to them. This includes every result I’ve had since December 2014, Specialist letters, medications, bills etc

I have unfortunately gone back to my extremely small portions and liquid diet, as my stomach is being non-negotiable, so I also had an appointment with my Gastroenterologist today.
He is in between the nurturing and non-nurturing doctor. He will tell me the truth, but still cushion me a little.

Reality is, I have to return to work eventually.
I have to deal with these attrocious symptoms and go back to a job of somesort. It will definitely not be fulltime. I will never be the same, and he admitted that. He also admitted that Childcare may unfortunately not be a good career path for me, as germs may set me backwards.
The chances of me waking up one day and being my normal self, are almost impossible.
Being ill, you know this. Somewhere deep down in your gut, you really know this, but do not want to accept it. I didn’t, until he said it today.

I listened to every word he said. He even spoke about the non-nurturing specialist and said that the older generation are less understanding when it comes to “invisible illness” and things like anxiety and depression. He feared that this doctor’s letter, would influence my other doctors into not helping me fight for a payment. But, he agreed that we (he and I) will fight for a three month payment, and if it is granted, we will review my case in three months in hope that I can return to work by then. But first, the Government have to say yes.

In the next two weeks, I have my final tests for intolerances to Fructose and Lactose.
I keep taking the digestive medication and hope that it works.
If I am unwell in three months, we push it to another three months. But by January next year, I should be at work.

This is a postviral condition that is nameless. I got very sick due to bouts of viruses during 2014, including two rounds of Shingles. My body could not cope. The virus attacked my digestive system, giving me the diagnosis of Gastroparesis. My nerves were attacked, giving me chronic neck pain. I am fatigued, which is pointing to a diagnosis of Chronic Fatigue Syndrome. The virus itself is gone, but has left an aftermath of damage.

It’s all about management now, and getting me back to work. There are no tests to be done, nor any medications to try. I must manage this, and put all of my energy into doing so.

I had a cry afterwards.
I wish I had a proper diagnosis, medication that cured me, and no symptoms.
I wish I could return to work in health.
I feel pressured now to get better, and go back.
But that is terrifying. What if I can’t? What if I am unable to work? I will not receive a payment. I will not have the money to pay for medication or appointments.
It has already been seven months. We are struggling to manage this. What if in six months, we are in the same place?

I am mentally and physically exhausted.

So, I will try and focus my time on pushing my body. I will do the Five Week Balance Exercises I have been given, and I will keep trying the stomach medication. I will continue to see my Acupuncturist and Osteo, and I will continue my liquid diet and try to manage my pain and nausea as well as I can.

I will try one last time, but after that if there is no improvement, I fear I will have no strength left in me to go on…

Glowing.

I thought I’d write a small post on one of the best days I have had in a very long time.
Every muscle in my body aches, and my stomach is now unsettled, so this will be another short one!

My sister did my makeup, making me look and feel halfdecent:

I can’t tell you how long it has been since I wore formalwear and had a face of makeup. I am usually at home, hiding behind a baggy tshirt, leggings, slippers and a beanie!

We went to a family Christening and then after-celebration.

The dizziness settled, and I was able to mostly walk around independently! I took a few breaks – kneeling down and sitting in the jumping castle.
Yes, a jumping castle because there were about ten little TODDLERS there!
You can imagine my excitement.
My heart exploded.
I felt like a kid in a candy store – so many children to play with, all of them too cute!

I feared, that having been off of work for a while now, I would’ve “lost my touch” but can I tell you – that was NOT the case.
I managed feeding, putting them to sleep, vomit all over my clothes, and of course playtime. I enjoyed EVERY SECOND OF IT.
I had parents praising me, asking me if I could babysit, encouraging me to start my own business (when I am better).

Mostly, I came home with a postglow, feeling hopeful;
Hopeful that one day I will return to the career that fills me with joy,
Hopeful that I will have more Good days,
Hopeful that my body CAN/WILL heal one day.

I must sleep now! I hope your days were as eventful as mine. If they weren’t – don’t worry. A day will come. I am certain.

The Positivity Fairytale.

I hear the phrase “you just have to stay positive” or “be more positive” on a daily basis, and more than once.
Don’t get me wrong, I’m all for positivity and having hope in management, recovery and learning to love myself and live with this illness. I understand that it works for a lot of people.

I don’t believe, though, that it is as simple as just “thinking positively” and all of the problems suddenly disappear.
You may disagree.
I know this topic will spark some controversy…
But, there is a massive difference between staying positive, and being open and honest about Chronic Illness.

Lets face it.
Chronic Illness is ugly.
It brings a whirlwind of symptoms that attack your body, dramatic life changes, as well as emotional and mental changes for yourself and those around you.
I am yet to come across a person who is struck down with a mild flu or Gastro Virus, and is running around the room being thankful for getting sick and having a few days of low immunity.
So, why would you think that I would be jumping for joy every day with my illness? How am I any different to you? Do you think that I wanted any of this? How is it possible to remain positive about it every moment of the day?

It is a struggle, and I see no shame in being honest about it. I encourage you to write honest posts and express yourself freely about your feelings in regards to your illness and suffering.
Being honest about your feelings will help you accept the illness. It helps others understand, and it connects you to a community of sufferers.
You should not be ashamed to share your true emotions. In order to promote awareness for our diseases, we must talk about our bad experiences, as well as the good.
I have bad days.
I have really bad days.
Occasionally, I have good days.
I am not afraid to write or speak about them, because once my feelings are out in front of me, I can move forward. Writing is a release. Without it, I would be in denial. Things for me will never be the same. I may never have the life I did before, and I may never have a formal diagnosis BUT what I do have is a chance to have a great story.

Telling someone to “stay positive” during this rollercoaster period, is not as great advice as you would think.
Does positivity miraculously cure my illness?

No.

Friends and family are overly focused on being positive. This is not a bad thing, but it is definitely a lot of pressure on the suffering to feel happy and content with their current situation.
Chronic Illness is not a walk in the park, and the world needs to accept that.
It also isn’t all about the symptoms. It is about how our families are effected, how our lives are effected, acceptance of the change and our new bodies.

How is someone meant to have positive thoughts when we receive insulting commentary like, “how are you exhausted when you don’t do anything all day?”

I used to be what society considers to be normal – going on roadtrips, shopping until my legs ached, working double shifts, going for walks, seeing friends, driving the streets…
Now I can barely walk around a shopping centre or stand for long enough to make a cup of tea…
But let me tell you something.
When I DO manage to achieve these things that you consider tiny, it takes a lot out of me. I try and do little things every day, and when I do, I am incredibly proud of myself.

I didn’t ask for any of this.
I don’t enjoy being on crappy Government payments, or the days spent in Doctor’s Clinics. I don’t enjoy being ill every day, and missing out on living.
I am judged.
I am judged for being on Government Payment.
I am judged for spending my days in appointments, with no answers.
I am judged for trying, despite having no answers.
I am judged for being ill.
I am judged for not being able to be the way you would expect me to be.

Being positive all of the time when dealing with illness, and especially an Invisible Chronic Illness, is unrealistic. In fact, being excessively upbeat is often linked with being in denial. Keeping an optimistic outlook can be incredibly tough, because NEWFLASH, chronic illness is terrifying. The uncertainty is terrifying and forces us to deal with a lack of control, surrendering to Doctors, trusting random people with our bodies, and the sad reality that life is finite.

This post is not me telling you to be negative every day and give up. What I recommend is finding a balance between the feelings of despair, and feelings of optimism. Do the best that you can to control what you are able to – decisions about which Specialists to see, what treatments you wish to try, a gameplan of your own, small goals each day. Find little things that you are thankful for, rather than constant positivity.
And most importantly, open up to family or friends who can tolerate hearing about ALL kinds of feelings. Do not put on a facade around people, or the blogging community. It is naive to think that we will hear you at your best all of the time.

You are allowed to say that this isn’t fair, that life is now unbearable, that you are confused, lost and terrified. And, if nobody wants to listen, I will listen. Because, I know what all of this feels like… The good and the bad. I won’t tell you to “stay positive”, but I will tell you to stay.

You have a story to tell… a novel of life, love, loss, struggle, acceptance and change.
I encourage you to tell your story; read it aloud, as I will mine.
Real life is no fairytale.

Defining “normal”

I have recently come across many posts where sufferers write about how they long to be “normal”. In a few of my posts, and most recently, I too speak of that longing for a norm.
I guess what I truly long for is familiarity, because when I fell ill I also felt like I lost a huge chunk of myself to the illness.
You may feel like you are not a whole person anymore. You might be embarrassed or ashamed that you have an illness. It happened to me, as I’m sure it has happened to you. It isn’t your fault – it’s inevitable.
It leaves you wishing to be normal, but when you think about it, what really is “normal”?

Google defines normal as, ”conforming to a standard; usual, typical, or expected”.

Is there only one standard that Google, and society, is referring to?
What do YOU think of when I say normal?
Is normal being able to be active?
To have the freedom to study, travel and work?
Is it being illness free, or having an illness?
Agreeing with others, or voicing opinion?
To be heterosexual, transgender, gay or lesbian?
Is normal being married, single, in an open relationship?
To do the things we were once accustomed to doing?
Or do we each create our own idea of what is an acceptable norm, and what is unacceptable?

I know when in school, there’s the longing to be popular.
In cases of Body Image, people long to be skinnier. You rarely hear of someone saying, I wish I was heavier (although, I’m apart of that rarity as I’m sitting here right now wishing my body would put on weight rather than lose).
Perhaps in our case (the chronically ill), “normal” means “healthier” or “happier”.
I know that when I say that I want to be normal again, I really just want my health to return, and that familiarity I used to have every day.

I’m still finding it hard to adjust to this illness and how it has changed my life so quickly. I am unable to work, drive, and struggle to be independant like I used to. The illness has restricted me, and on some days it leaves me bedridden. I’m struggling to accept the fact that I am actually this sick. Sometimes I wake up and think that I can go back to work with the kids, or hop in my car to go for a drive… That obviously isn’t the case anymore.
Instead of accepting the fact that I have a new norm, I waste time worrying over the wrong steps I took to possibly get to this place, hating myself and I guess, trying to blame someone or something for changing what I was used to.
Maybe that’s the harsh reality of it all.
Maybe we are all meant to be different.
Maybe we are too afraid to accept change in ourselves and our lives.
Maybe we don’t like the fact that the change can be a disadvantage.

Maybe we are too proud to admit that we as humans, have flaws.

Maybe there really is no such thing as “normal”.

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…