guidance

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 : your worst critic.

If dealing with the symptoms of Chronic Illness wasn’t enough, we also have to deal with the physical changes in our bodies, and having to face them mentally.
With detiorated health and immunity, comes physical changes that we have no control over. For example, I have lost weight at a ridiculously fast rate so I’m currently all skin and bones, my hair is falling out in clumps, my skin has turned to sandpaper and all of the colour has drawn from my face and turned me into a ghost. I look in the mirror and see someone who is sick, but I honestly cannot see the change in my weight. Others, can and they aren’t afraid to point out that I have a ‘problem’. They aren’t afraid to say,
‘wow you look shocking today’
‘Have you seen your um… face?’
‘What is happening with your hair?!’
‘You’ve lost SO MUCH WEIGHT’

I know that people aren’t doing this intentionally. They are stating facts, and probably don’t really know what else to say. So, um, maybe just don’t say anything at all?
Because yes, it bothers me, and I have no control over it.

If you read my post from earlier on in the week – Parents in the Shadow of Illness – you would have read that I was sent to an Adolescent Clinic in my earlier years. Sufferers of Anorexia, Bulimia and Body Dysmorphia were sent to this clinic too, so I was exposed (at a very young age) to this disease upclose and personal.
I didn’t know exactly how each of these teenagers felt, but what I understood from my time there was that they looked in the mirror and saw a completely different image to what was actually reflecting them.
I saw them hide behind their oversized jumpers and baggy tracksuit pants, and then further behind a trench-coat, because they weren’t happy with themselves.

I, myself, had been diagnosed with ‘Borderline Anorexia’. I remember asking myself, what the hell is the difference between borderline and straight out anorexic? We’re all underweight.
Why further break us down into smaller stereotyped categories?
Someone then told me that my illness was causing me to lose weight, and these teenagers were ‘doing it to themselves’.
No. It is not something that you ‘do to yourself’.
It’s a mental illness, or some people like me had no control over it as it was an alternate issue causing the weight-loss. It didn’t matter because it led to the same thing in the end; being underweight, unhealthy and judged.

When it comes to Body Image in general, why is it that we always believe our worst reviews? We can never accept a compliment, and when someone has the nerve to criticise our appearance, we let that cloud our mind and eat away at our thoughts.
There is always something, with EVERYONE, regardless of gender or social status.

Why do we become obsessed with wanting to be like someone else? As skinny as the celebrities, as tall as the models on runways, as attractive as that guy/girl you just saw on the train? (and here’s another thing, don’t gender discriminate. Guys suffer too). You’re looking at one girl, wishing you had her waist. She’s looking at another girl, wishing she had her breasts. That girl is looking at a guy, wishing she had his hair. And that guy is looking at another guy, wishing he had his body. It’s an endless cycle.

Isn’t there something beautiful in being DIFFERENT?
Imagine a world where we all looked exactly the same – that there was a median for men and women. Yes, there would be nothing to compare ourselves to, and no individuality! We would all blend in and there is no fun in that, is there?

There’s always something to complain about.
We wish our teeth were brighter.
We wish our thighs were skinnier.
We wish we had less spots.
We wish we were taller, shorter.
We wish we were curvier.
We want smaller breasts.
We want larger breasts.
We want less hair, more hair.
We want to be darker.
We want ‘natural’ skin, yet we use more makeup.
We want to look ‘beautiful’. What is beautiful, really?

I think that the true definition of ‘beautiful’ is being able to completely accept yourself with all of your flaws and imperfections.
To be able to look in the mirror, and PAST all of the negativity, and be proud of who we are, where we come from.
Sure, it’s great if you want to work on yourself and create a better you, but don’t interpret that as losing yourself in creating someone else.

As I said above, this illness has made my own personal view of my body and beauty, pretty harsh. Sure, I have the occasional day once every few months where I have a family event, slap on some make up and try to look ‘pretty’, but that’s rare and it doesn’t mean that I feel good on the inside.
I still cry every day because I don’t look the same as I used to. I cry because I feel unattractive. I cry because I can’t fit into my favourite clothes anymore. I cry because my body is working against me.

I am like you, my worst critic.

So here I am, flaws and all, sharing with you that it is PERFECTLY OKAY to not be someone else’s definition of perfect.
That we are beautiful with our illness, and without.
Bad Day vs. Not so Bad Day
We need to stop hating ourselves, and start loving ourselves.
You, are not alone X

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.