loneliness

A Letter to Myself.

Dear Self,

Today is one of those bad days.
You are curled up into a ball on the floor; your tears soaking into the carpet. You are crying so hard that you heave, and you cannot bear to stand up with a fear of falling straight down. The nausea is really bad today, and you have tried everything to relieve yourself from it, with no success. We have gone from eating consistently, to not eating at all.

You are planning your Goodbye Letters in your head, and you are telling yourself that you cannot go on another second with these symptoms.

You want to feel nothing, for once, instead of everything.

You have every right to feel this way.
Life never used to be like this.
I remember when things were much simple; where you had the strength to work ten overnight shifts in a row, and overtime. Night was day, and day was night.
They asked you to work on your day off, and you said yes every single time.

You worked when you were sick, and you worked when they weren’t even paying you to work.

The days went quickly and were jam-packed.
You were driving, going on roadtrips, Sunday breakfast dates, shopping days, you slept on the beach and woke up covered in sand at 3am. You were eating as you pleased, and had a bright future in mind for yourself.

You smiled more back then.

I guess you, nor I, ever imagined that something like this could happen, and that things would drastically change in the blink of an eye.

All of the things you used to worry about – not having enough money saved, having to work, being late, the petty little arguments with people – none of it matters now. We have been faced with bigger problems.

I know your mentality is being compromised, and you think it is easier to leave and give up, but I need you to stop for a second and just breathe.

I need you to see what I see.

I see strength.
I know you hate hearing that, but you ARE strong.
I can assure you that most people would not cope as well as you are with chronic nausea, stomach pain and dizziness; not to mention being stuck behind four walls, losing your job, the endless appointments and tests, and lack of answers…

I see someone who still manages to put others before yourself.
I see someone who can still laugh, even on the crappiest of days.
I see someone who is ambitious and continues to push their body to strengthen, no matter how weak they feel.

You say that you have made no accomplishments this year, but my dear, grief has clouded your vision.
Pre-illness-you could only make toast.
In the time you have been off, you have learnt to cook many meals and desserts… things you would not have had the patience for before.
You stress less about the smaller things, whereas before, you were one giant walking stress web.

Six months ago, you couldn’t get out of bed and you were eating zero day in and day out. Today, you are walking better, and for most days, you are able to eat consistently.
You may not have travelled, you may not have graduated, you may not go out partying every week or go on adventures with friends, or be working in your dream job, BUT you have grown up quicker than most people your age and I promise you that you are wiser than they.

You appreciate the smaller things that they are too busy to see, and once all of this is over, your love for life will be greater than your hate for this illness.

I am amazed by your ability to function with these symptoms.
I am astounded by your bravery, and wish you could see how much inner strength you have. When we beat this, not if, I hope you know that you can face anything thrown your way.

I know that the symptoms have prevented you from driving, travelling alone and engaging with others, but it does not for a second mean you are selfish, lazy, weak or a disappointment.
Stop wasting your time on the people who are telling you this; the ones who don’t message you back, or make you feel unimportant.

PLEASE, stop telling yourself that you are unattractive.
Your body has been to hell and back, and considering, I think you look quite good for a sick person. You have fat on your body now, rather than being riddled with bones. Your skin may have changed, and your hair is frail and falling out, but you are still beautiful.
You are measuring yourself up to people who hide their average features behind a veil of makeup.

Now here’s a touchy topic…
You better still be listening.

You are sitting there, feeling sorry for yourself, alone, and struggling to see how someone could love you with this illness.
And you are actually repeating to yourself, “how can somebody love me with this illness?”

Nobody loves you any less. Your true friends and family know who you are and that your illness unfortunately dims your light.
They might not know what to say at times, but I promise they want you to beat this as much as you do.
And, they will help you if you simply ask for it.
They want to see that smile reappear, as much as I, and they will help you in any way that they can.

Don’t listen to anyone who has told you that you are a burden, unlovable and will be alone.

You ARE loved, and you ARE lovable whether or not you have this illness. There is someone out there who doesn’t care about driving you to appointments or waiting with you through tests; someone who will listen to you cry on the worst of days and give you a reason to smile; someone doesn’t mind if you have to stay in for the night instead of going out, and would be happy to link arms with you when you are dizzy; someone who will lie with you when you are feeling nauseous, and give you massages when your body aches; someone who knows what you can and can’t eat, and who will do thoughtful things for you just because.

You WILL get married, move out, and one day you are going to be a wonderful mother who knows the ins and outs of the medical system (and you will definitely need to know that if you end up having those three boys you are dreaming of…)

I know today is hard, and I know the past few weeks have been hard.
Do what you can, and if you have to cancel on someone to rest, then so be it.

I know you are tired of making progress and then falling backwards time and time again.
Do not feel like you have to justify yourself to anyone, or come up with answers that you don’t have.

I know that today you are struggling to find a reason to stay, and I know how alone you feel.
Do not let the anger consume you.

I know that you fear this is neverending, and you’d like to end it all yourself right now.
Do not feel rushed to achieve all at once, or to get better.

I can feel you clutching at your last straw.

We may never reach 100%, remember.
We may never receive the answers we are desperately seeking, but we must continue to try.
We still have Specialists on our side who still believe.
Medicine is only advancing.
We still have some time.

If anyone can do this, it’s YOU.
We’ll take it one step at a time, I promise, and if nobody wants to come along for the ride, we will always have each other.

Love from Me.

I Believe You.

I went through my last lot of tests today.
The Royal Eye and Ear Hospital for Inner Ear Testing – checking for Balance Disorders.

I know that other sufferers tend to say, “I went in with no expectations”.
Not true.
You went in with a tiny fragment of hope.
It may have been as small as a single piece of glitter, but it was still something.
You don’t have to pretend to be strong to me, or anyone else.
Be weak.
Cry about it.
Scream about the unfairness.
Punch and kick until your heart is content.
Just don’t lie and tell me that you are completely content with coming out with no answers.

If you lose all hope, you lose yourself entirely.

I had hope that today’s tests would close the curtain on my living nightmare.
I, as usual, came out with no answers.
I cannot tell you how disappointed I felt.
My heart sunk, my soul sunk – worse than any of the times before.
The final tests after months of exhaustion.
The Lady was lovely, though. She sat me down and said, “there is something called Functional Disorders. Things we as Doctors cannot see. You may be apart of the rarity of people who suffer from them. Some Doctors don’t believe what cannot be seen. But don’t worry,” she told me. “I believe you“.

In my six months of appointments, she was the first person to say those words.

I didn’t cry until I got home.
It hit me all at once.
I was holding onto the sink, trying to wash the dishes one at a time and incredibly slowly. As I scrubbed each utensil, I felt my head spinning. My weight leant on the sink entirely. My legs felt like jelly and my eyes began to roll. I had to keep telling myself, “not many to go, not many to go”.
My body has deteriorated, and I have no control over it, nor know why it has recently given up on me.

I cannot describe the dizziness in any other way than, my entire world spins when I am standing and my legs literally turn to jelly. I feel like I am falling. I am constantly nauseous too, and my stomach is refusing to digest properly. I am a mess.

Every test result has been negative.
Every Specialist I have seen sees nothing, therefore there isn’t a problem and the Nothing “cannot be managed”.

I can’t even stand on my own anymore.
Just fucking toughen up! I screamed at my inner self. Just show me where the problem is!
Nothing.
The tears welled and the small lump in my throat turned into a melon.

The life I had pictured for myself and the one I am currently living are very different.
Disability Pension fast approaching at twenty-two, no job, no career prospect, no savings, no partner, no travel experience, minimal friends, stuck inside these four walls, missing out on living, stuck in concrete with no answers.

The nightmare that never ends, and I can’t help but ask myself, why me?
If not me, it would have been somebody else.
I wouldn’t want anyone to suffer with this unknown disease inside of their body. I wouldn’t want them to watch all they had worked hard for, crumble beneath their fingertips.

I am exhausted and emotional.
I don’t want to hear that I am strong.
I find it insulting.
I’ve noticed that everyone likes strong people because they don’t ask for anything.
That doesn’t mean that they don’t need anything.

I need to be able to manage this.
I don’t know the point of this post tonight. I apologise for any grammatical errors as I am writing amidst tears. I am terrified of what happens tomorrow onwards. I am terrified.

I don’t know where to go from here.
The light at the end of the tunnel is now dim.

I just want you to know that if you are suffering from something similar, something invisible…

I believe you.

The Beginning of the End.

I’m struggling to find a reason to stay here.
I don’t want to fight anymore.
I have fought long and hard enough.
The past two years have been a blur of disappointment, illness, appointments, yelling, heartache, jealousy and the unknown.
The past six months have been a living nightmare.
The thought of leaving doesn’t scare me anymore.
I find peace in knowing that I will be numb, for once. I’m sorry if that is too raw for you to read, but it is the truth. I long to feel nothing.
I’ve forgotten what it feels like to feel anything beyond these symptoms. I toss and turn all night battling the neck pain. I wake up feeling nauseous, and when I go to get up and out of bed, I usually fall to the floor due to the dizziness. The nausea stays all day, despite what I eat, what I drink, what medication I take. The dizziness keeps me from walking on my own. I hold onto the shower door with a tight grip, I hold onto the benches and drag myself around the house, I hold the walls, I hold onto someone when I have the energy to leave the house… Sometimes I even have to crawl.
How pathetic is my body?
How pathetic am I?

I can’t even stand on my own anymore.
I can’t eat a normal meal without feeling grossly ill.
I can’t go out to the Grocery store, or drive a car, or go to work for even an hour. I can’t go out with my friends, or enjoy myself. I couldn’t even keep a relationship going. I have no energy. I am now that person who has to rely on others to help her live. I have been stripped of my confidence and independence.
The only travelling I do is to and from appointments, and in saying that, I have to beg people to take and accompany me to them.
I am an embarrassment.
I’m exhausted from the continuous appointments with Specialists and Doctors who have no reasonable explanation as to why I am so sick. I receive a diagnosis, and you’d think it would be enough to move on with my life, but instead, they strip me of that and tell me that they ‘aren’t satisfied’. So, I am back at square one again, unable to manage this invisible something. I’m tired of the tests, the Health speeches, the medications, the trials, the dead ends.

I’m tired of feeling.
I’m tired of the sympathetic stares, and having to explain this to people and have them look at you like I am stupid. I’m sick of hearing, “but, you are SO strong”. There is no strength in this illness – only weakness and repetitive torture.

I hate social media at the moment as it is a constant reminder of what I am missing, and what everyone else is gaining. Marriage, kids, travel, graduation, friendships, dating, health. And here I am, stuck and incredibly alone. Yes, I am jealous. Judge me, I don’t care. When you have had everything snatched from your hands, you are entitled to feel jealous.

It doesn’t matter how many people tell me how strong I am, how many people tell me they are here for me, that they understand, that it is a mind over matter thing, and that it will get better if I stay positive…

They are wrong.

You cannot possibly understand if you haven’t been through it.
I feel as though I have no control over this anymore, and that I will never achieve anything I set out for myself.
When I thought it had taken everything from me, it took the man who I thought was the love of my life. Because being with someone who is this sick is too hard to deal with. And now, I am left having to fight alone; fearing nobody will ever live thing inside of me with this ever again.
I’ve forgotten the little things.
What it feels like to have sand in between my toes, the wind in my hair as the windows are down in the car, walking through the city, the nights spent in hotels, watching the stars from late night drives, trips away, the warmth I felt when I worked with the gorgeous children, the pride I felt when I finished units in my course, dressing up with a face full of makeup and confidence, shopping, coffees and catchups with friends… It all feels like a dream to me.

What is the point in me staying here, and continuing to fight? To feel no change? To have no control over my own body? To continue to be set back? Lonely? In pain?

What about my happiness, and what I want?

When do I get my day free of these awful symptoms?

When do I get an answer, or a way to manage?

I am tired, and I’d like to go now.

I fear as though this world is too big for someone as small as I.

I feel as though this battle has already been lost.

Not as inspirational as you thought.

Another doctors appointment where I come home in tears.
My symptoms have worsened this week.
I am not Superwoman.
I tried to explain it to him.
I am too dizzy to walk, my stomach won’t digest food, my nausea is taking over my day, my vision is deteriorating, my neck muscles are throbbing and throbbing, and never stop throbbing. I am growing weaker, and weaker by the day.
This thing has ruined my life, and I will not let you sit there in silence and give me that sad ‘it’s-all-in-your-mind’ look. People don’t just get these symptoms for it to be diagnosed as NOTHING.
Everyone is moving, and I have stopped.
But I can see them. I can see their judgemental stares.

I spoke so quickly, my sentences were coming out as word vomit. I brought out my little pre-written timeline, and I showed him all of the referrals I wanted next.
I gave my doctor a gameplan.
I told him what we do next.
After the Gastric Emptying Test on Thursday, I want more blood work done.
I want an MRI for my neck.
I want my goddamn life back.
I want my body back.
I want my energy back.

I want someone to believe me.

His stupid facial expression felt like a hundred arrows had just been shot into my heart at once. It felt like I had been lit me on fire, and I could feel every ounce of my skin burning.
I felt so naked, so exposed.
And inside of me, whirling in the pit of my stomach, It held back my hair because it could sense vulnerability, and It chuckled in my ear; it’s all in your head.
“Anti-depressants,” was the only word he said, that cut me from my thoughts.
These were his only words in my half an hour appointment.
BECAUSE ANTI-DEPRESSANTS JUST MIRACULOUSLY FIX EVERYTHING, DON’T THEY? I am depressed BECAUSE of the illness terrorising my body.
But hey, anti-depressants will definitely get me out of here so you don’t have to deal with me anymore.

A few of you have asked my where I see myself in the future, and if I have any dreams? Will I go back to childcare? Do I want a family? Do I want children of my own? Do I want to travel?

On nights like this, I imagine my future self in a psych ward, being pumped with medication, my mind corrupted by this disease, my visitor’s log empty.
I don’t have a family, I don’t have friends, I don’t have Love, I don’t have hope, I don’t have control.

Sometimes, I don’t even see that.
I see dirt, rotting flowers and complete darkness.

You are NOT your illness.

“So, tell me about yourself…” is how one Specialist began our first appointment. He went on to tell me that he had to really get to know me, in order to understand how to treat me, and what my body could or couldn’t handle.

My response was, “I’m sick. There’s nothing interesting about me”
To which he said, “But who are you without the illness?”

I realised at this moment that I had allowed my Invisible Illness, to define me.
Please remember this introduction, as I quickly move forth a little.

I had a bad night with my symptoms, which seemed to have carried over to today. The more I focus on it, the sooner I notice that the chain reaction has begun inside of me.
Firstly the symptoms, which leads to the sadness, followed by the tears, an anxiety attack, and finished off with heightened symptoms.
I decided to research, which turned out to be a mistake (as well as a blessing for this topic post) and came across a post in which I was not impressed by. It had somehow received over ten thousand views/likes/hits, (the name I will not mention) and I am at a loss trying to figure out how/why. It did made SOME valuable points, but overall, the article pretty much stated that sufferers of Chronic/Invisible Illness need to ‘toughen up’.
We have to force ourselves back to work, to preoccupy ourselves.
We have to stop whinging.
We have to get out of bed and force ourselves to fight, or else we aren’t fighting back.
We must stop spending our time on appointments and in Doctor’s surgeries, and focus on management techniques.

You like tough love? Then this post is much suited for you.
But I, a sufferer of an Invisible Illness attacking my body, do not agree.
I have some days where my symptoms are controllable enough for me to see my friends, go to the grocery store or allow me to live normally. I still need assistance, but I do have good days.
But, I also have days where my body is so exhausted that I have to rest, stay indoors and rely on people for assistance.
It isn’t my choice.
It is the way things ARE.
Do not always believe what you read on the internet, or feel disheartened if you come across something as harsh as that.
YOU know YOUR body better than anyone, so don’t let others tell you otherwise.
The outsiders see black and white, but we are exposed to an array of colours.

I decided to write my own coping mechanisms whilst dealing with this nightmare.
Stop questioning/asking why
Let me check WebMD for a diagnosis.
Maybe I have lymphoma? Bacterial Overgrowth? An autoimmune disease?
I am being punished for being a bad person.
This is karma for taking things for granted.
Is it because you had two cheat days last week?
I am sick because of that messy night out I had a few years ago.
I am just overall unlucky.

If this sounds like you, then you must STOP.
I know how easily it is to fall into this frame of mind. I still do it when my days are overwhelming.
But, you are making things worse for yourself, not better!

Stop hating yourself
Make peace with your body, and mind.
This is NOT your fault, and instead of feeding your mind more negative energy, you could be surrounding it with positive.
Go to a mirror, and instead of pointing out the things that you HATE about yourself, (ie. The loss of weight, the acne, the nausea, the paleness, the hairloss) point out the things that you LIKE about yourself.
At the end of every day, write down something you are THANKFUL for, even if it is seeing that little bird perch itself on your window sill whilst you were stuck in bed all day.

Understand your symptoms
Confront/Organise/Control
You need to be able to live with the least amount of suffering as possible.
Admit you have an illness that can’t be diagnosed, and don’t be ashamed of that.
Observe your body and take note of what helps ease your symptoms or what worsens them.
Organise appointments, write a symptom or a food diary, a Medical Timeline, have a calendar ready.
Have Control. Only ask your body to do what it can tolerate.
Work WITH, not AGAINST.
And please don’t say, “I can’t”, because you CAN.
You may not realise it, but you do it every single day.
You are living proof of this!

Pinpoint your stressors
Stressors usually include:
– the Chronic Illness itself
– Symptoms
– Uncertainty of the future
– Financial Difficulties
– Immobility
– Insomnia
– Negative influences
– Feeling of loneliness/inability to open up to anyone
I know we can’t control/rid ourselves of some of these stressors entirely, but we can learn about them and learn how to manage them.

Have goals
Continuing from the topic above, your goals should be small… take baby steps.
For example, “Today I will…”
– eat three small meals.
– get out of bed.
– make a Medical Timeline.
– write a blog.
– work from home.
– try alternative medicine.
– research/apply for financial aid.
– change my diet.
– stop drinking.
– not inflict self harm upon myself.

Seek support
Speak with your Doctor, a Counsellor, a chat site, or call a helpline.
Read a self-help novel. Reach out to family or friends.
And best of all, WordPress has one fantastic Support Group of people who are also suffering, and who WANT to speak to you! Reach out to our little community!

Which brings me to my last, and first, point:

Don’t let your illness define you.

Who are you WITHOUT the illness?
Are you a writer? A mother? A husband? A reader? A baker? An Accountant?
What are your talents?
What are your interests?
What is your favourite meal/movie/colour?
What brings you happiness?

Now, list five positive traits about yourself – yes, right now.
Here, I’ll start it off: I am Confident, Creative, Honest, Leaderly, and Lovable.

And remember, you are not alone.

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…