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.
WE
WANT TO BE INDEPENDANT !
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.
TO JUST; BE 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.
I
AM HAPPIER THAN EVER
A
BETTER HUMAN BEING
AND
ABOVE ALL A PROUD MUM
--
Melanie:
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THANK YOU ALL SO MUCH
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