invisible

Friendship in the face of Chronic Illness.

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

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

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

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

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

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

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

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

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

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

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

Because, I have a very big heart.

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

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

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

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

You 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…