maandag 9 november 2015

ENGLISH: How do you deal with an ill person ?

How do you deal with an ill person ?

How do you deal with someone who  is seriously ill and/ or  has a chronic condition ?

Many people know , they think.  But  you would be surprised.
Not everyone’s situation is the same, but  I will  write this  with me in mind and I think that lots of fellow sufferers will agree and also all who need to share the burden ( also a mighty task) with  a  chronically/)seriously ill person , it might open your eyes, in a positive way.

Ill people’, how do you deal with them?  In this message It doesn’t really matter how ill a person is, what the illness is or what the prognoses are. It could be about a person with ‘only’ a small limitation or a  terminale ill person. But when you get my message you will know what I mean.

In most cases an illness ( any illness) starts with symptoms. They get worse. You are going back and forth to your GP and home. You think it must be you. Sometimes it take months, even years before you get diagnosed.  And for the ones that do not fit  any box there is always the referral to a psychiatrist. With whom you can have a nice cup of tea before they send you back to your GP.

And that  is where the story starts,. Every story is different, but what counts is the moral of the story.

When you finally get  your diagnosis  (maybe even several) ,  the world collapses. It depends of course on the kind of illness, sometimes people feel relief. As to say : ‘ Told you so,  I am not crazy,  there really is something” 

And there you are, with your cup of tea staring at the letter from the consultant and you keep staring at your own name and the diagnosis  You start to google.  Doctors often tell you things in a nutshell,  mine did, as there is no knowledge about your illness and you will have to discover it all by yourself. It is like  studying at university. When you know the first chapter , you can start the next one. it never stops. But instead of a degree , you get a paper with on it your diagnoses.  And after all that studying instead of being able to get a good job with a nice wage packet, you get just enough to be able to eat.

To make a long story short. whatever illness you have, you need to fight it yourself.  The decline, the going back and forth, the diagnosis , the going through the mill..etc..

I am trying to keep it as general as possible, but I can’t compare each illness with each other. Maybe the process I can.  With this blog I am trying to make  outsiders/loved ones understand better why that ‘ill person’ reacts the way he/she does. Can’t you do anything right ?. Are you saying the right things? Would it be better if you  didn’ t say anything at all ?  
Or do you really need to talk ?  And how do you treat ‘ someone like that’ ?

What almost all 'ill persons' have in common is the proces they went through. They know the doctor is not always right, even though he was right about the sinus problem and the athlete’s foot. They have fought for years, they have been removed from society. It is up to the strength and the ability of the person to build a social network and to KEEP it.  Because  however tough it may sound,  most people rather walk away.

I will give you a personal example: I used to be a shy girl. I never stood up for myself. Nowadays I am fierce lioness , that didn’t happen overnight.

And in our willpower we are! We are proud of what we can still do and  in time learn not to look back at the things we can no longer do. Unfortunately not all remain standing and many ( even before the illness pops up its head) consciously kick the bucket. The network around an ill person is very important.  Because even though all the things we can still ourselves  and even though we would like to be treated as a NORMAL ( healthy) person: Dear audience, we unfortunately are not healthy and we can not do everything ourselves.  Perhaps  sometimes we are too stubborn to admit this and therefor we often cross our own boundaries. Okay admittidly sometimes we are too headstrong/proud to ask for help, but even if we have gained, after a long road, more freedom, we are in of course in in may things still  DE-PEN-DANT..Yuk

It is however important to be treated as normal when spoken to. Never patronize us. And don’t hide your own problems ( however small in comparison) from us. We have a nose for this and we want want to know everything from YOU. Because we love you , are interested and even though it might be confronting, it is important to give and take in equal amounts. We don’t want to be treated as princesses . Or see eyes that look at us with pity ( Okay : it is allowed  in some rough moments :p)..

And then you do as asked : You treat your dear friend/ family member as normal,  and you still get shouted at for that fact that you don’t understand anything. Pfff it is difficult to be in your shoes. Therefor I better apologise;  on behalf of me and my fellow sufferers : SORRY !

But you know what it is and especially for the care workers or the ones you are dependant on, we do want to be treated as normal, but what does that mean. It means that  you need to be your own unique self with us, don’t patronize us, don’t feel sorry for us, have conversations, like you would have with any healthy person.

But  where does it go wrong?
We have to show ourselves, you will see us during our most vulnerable, defenceless moments. It goes wrong when the being ill of the person you are with is becoming normality  , for you and the others around us.  When we just have been diagnosed there are so many people coming to see us in hospital and at home,  enough to  fill the the O2 Arena in London ( so to speak) . There is a lot of talking and people are shocked.
The difference with someone who has a short illness ( e.g. two week with a broken leg in hospital) and someone with a longterm illness ( chronic or even terminal) is that the ones in category A (short term) are being terribly spoiled and people will support them until they are back on their feet ( literary ). Not that we want flowers every day or an arm around us . No That’s not the point.  I know sweethearts , it’s complicated.

So what do we mean ? Well actually it is very simple, but we are often too scared to say it. So therefor I will this now do this in the name of me and my fellow sufferers:
We do not get used to being ill ! Every hospital admission is as tense as the first. Even though you are getting accustomed  to it, you never ever get used to it. No, not really.

Not even the delightful respiration tube,even though I experienced it many times

But the most painful thing is that, whilst you go downhill, life goes on.  And you can have the most positive outlook in life, we too have emotions. It gives us the drive and inspires us to e.g. study at home , like I did ( children’ s psychology) But to experience that the ones you love most think it is normal that you are lying there ,  like that….and that you rarely have visitors when you are in hospital. Operations you have to go through on your own. Whilst you still having that fear that you won’t go home. (as in.... you know what I mean...)

Always glad that I made it through (a surgery) again..

AND lesson number two:

Please don’t  blame us for being verbal with a carer, a doctor or perhaps even you. Try to understand  the situation from the side of the ill person. You can walk away, ignore. We can’t  and the only weapon  ( like an animal instinct we are not at ease with) we have is our mouth and that makes us verbal.
That may come across very intense, but as described in the intro, there is a long history.

Unfortunately I can’t explain it ALL in one blog. Because that means I would have to tell every last detail from the very beginning, that doesn’t work, You can however find more information on ZoNietSaar.

Being verbal is a matter of survival. Because we are our own specialists ( and therefor may come across as know-it -alls) and we have had to teach the doctors  a lesson , because if we hadn’t we would no longer have been here.  We can spot the tinniest medical error from a mile away. Therefor we pay attention and are alert.  But when we are defenceless ( when we have a seizure for example, sleep, are under  anaesthetics , under the influence of medication etc..) and  we have no control , we are easy prey .  We have experienced many times, that when we are not paying attention e.g. in hospital , things go haywire. 
I could give you a list as long as my arm, but I will spare you. 
When we are defenceless, we are more vulnerable then ever.

So conclusion:
Our mouth is our only weapon ( like animals that feel danger coming)
So when we get gobby , remember that.
Don’t stick labels on chronic/very ill people
We have a certain survival mechanisme and our personality has adapted itself , in order to survive. We developed willpower.
We can enjoy the smallest of pleasures. Someone else may think it is normal, but for us it is a delight.

We are counting our blessings every day.

Treat us as normal, but please be aware that where you might be used to ( he/she being taken into hospital again, it is not going well, again) , we are not used it  and we never will be. So we hope that especially  when it is not going well with us and things are worse then at the time of diagnosis, you can make the effort to come. Every day could be the last.

We are strong as steal. Not every one is as positive, or as strong, you can’t compare people. But be conscious of the fact that being chronically ill  is a fulltime job , it really is. We don’t work from 9 till 5, we can’t take a break (to give an example).

When you have the flu  and you are really  really ill with this, you have told work/school that you are staying in bed ( in a dark room)  and you feel miserable, try and remind yourself of people who feel like that 24/7.
And that despite our pain and discomforts, we are going for it. We enjoy and we just live our lives.

A lot has been taken away from us, but ( and now I am speaking to everyone , also the ill person , who has not yet succeeded to remain standing) because it is because of that , that it make the  things that are there glow. 
Oh and how I embrace. 
I am grateful for the willpower I have been ‘given’.
My children are the most important factor. My mirrors to tomorrow, my strength, my fighting spirit and joy.

SORRY dear audience, that it is not always easy. But thank you that  despite the moments of -I don’t know how and what - you are still there.
This is how you get to know your true friends.  Thank you ( from me and my fellow sufferers) for being there. 

Oh and we are not made of porcelain, so when you don’t know how or what, don’t be afraid and just ask. It will make you and ‘ your’ ill person understand each other better.

You do not get used to being ill. But you have to learn how to deal with it. In life you are always given choices:
Choice no 1:  Throw in the towel
Choice no 2:  Accept it , because actually it is the only choice.
It doesn’t happen from one day to the next. But , ill person,  you will get there. 
And you there , reader, you are fantastic,  just for reading this and  trying  to understand more of  ' the world of  people who are ill’.

Well people run away , stick labels, etc etc.. But the ones with the biggest hearts stand the test. Life itself is a test.
And I am very grateful  that I can live.


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