Letter to my friends ‘The Well’ (those who are without chronic illness)
from us, ‘The Presently Un-Well’ (those who have a chronic illness)
To my friends ‘The Well’ I say this; we ‘The Presently Un-Well’ need you.
We need you as
suppliers of food,
and as supporters.
As listen-ers, as hear-ers, talk-ers and pray-ers.
As company here with us now and
as a more distance reassurance we know is always out there for us.
But we probably don’t need you as medical advisors.
We tend to have enough of those.
We need you as those who recognise that we are struggling and who don’t diminish the changes happening in our lives.
As those who will sometimes tell us all about their day and remind us about the rest of the world.
As those who will sometimes be silent with us and help foster our new world at home.
But generally we don’t need all of these at once.
Sometimes we don’t need any of these at all.
We may not even know what it is we need until you offer it.
Or we may know very specifically what we need.
And how often.
Day to day what we need will change.
But that we need you never will.
Never assume we are ok.
But don’t always assume we are at our worst.
Know that to ask ‘how are you’ may mean we actually give you the real answer.
Or we may need to forget how penetrating and useless that question is to us right now and brush it aside so we don’t fall in a heap.
Know that to say ‘you look well’ may sometimes be the lift we need.
But at others times it may just remind us that most of the time we obviously look unwell.
And other times it will sound to us like you no longer believe we are still un-well.
If you say ‘you never seem sick when I see you’ it is like you are throwing stones at us.
We tend to work hard at disguising our ill-health.
Or we may have something that you will never be able to see.
Neither of these diminish the truth of our ill-health.
When you see us we are probably out,
or if we are at home, we have prepared ourselves for your coming.
To go out we have prepared ourselves;
we have done whatever it is we need to do to survive being out.
We have slept in
We have taken medication,
We have brought comfortable chairs,
We have rugged up,
We are not eating certain food.
We are standing or sitting as needed.
We haven’t done anything else all day or maybe even for days leading up to being ‘out ‘in preparation.
And without fail we know that later…
tonight when trying to sleep,
tomorrow when waking up,
the next day
or for the rest of the week
…we will pay for being out now.
Some days we may not be able to lift a book, hang out the washing, cut up vegetables.
Other days we may walk around the block, go to the shops, go out for coffee.
Some weeks we may appear to be getting better,
others weeks we fall deeper than we were before.
Sometimes we know what triggered a particular low time and it was a conscious decision we had to make.
It was a measured choice.
We went out,
we did something,
all the while knowing the consequences of this decision.
Sometimes we make this decision because we wanted to do something,
Sometimes we make this decision because we feel you will not understand how difficult it is for us to attend, because it is an important family event, because we want you to still be our friend, because we are worried you will be annoyed by another RSVP - ‘no, we cannot attend’.
But most of the time, the low times confuse and frustrate us at the inconsistency of why we are experiencing it.
By the unreliability of it, the uncertainty of this condition that
weighs upon us
like a long, black cloack that sometimes is made of cement and at others is made of wool dipped in paint.
We will sometimes need to go out for a change of scenery.
But going out may just only mean the local coffee shop or a walk to the end of the street.
Sometimes we would love it if you came to us so that we can see you without needing to prepare for going out.
But if you do come to us, you must be sure not to judge us for how we live.
For the dishes un-done in the sink.
For the bins that needs to be taken out.
For the couch where we have clearly been living for some time.
For the floor that is not vacuumed.
Or the clothes that are not washed.
Sometimes having you volunteer to help with these things around the house will be the greatest relief (provided you do it simply and kindly as a friend).
Sometimes this will only reinforce our inabilities and weakness.
Yet sometimes you should probably ignore our pride.
The pressure of no longer providing for ourselves,
will inevitably weigh us down even more
making us feel us so painfully dependant upon others,
humiliating us with our weakness.
Sometimes the difficulty of trying to get well,
to live well,
the pain of getting well,
the dedication to get well,
the financial burden of trying to get well,
may pierce our heart again and again,
taunting us –
not only are we un-well but we are a financial burden.
And still...we are not well.
Sometimes we will just be grateful that for this moment right now;
that the pain has slightly subsided,
that the headache has diminished,
that the sun is warm and shinning through the window.
No matter what happens we will somehow, at sometime, have to come to grips with the idea that we are no longer who we were before.
We can no longer expect what we used to of ourselves.
You can no longer expect what you used to of us.
Sometime we will be content to sit within these changes in our lives.
We will feel we are able to live with what is happening to us.
Not like it or understand it but live within it.
At other times we will rage against what we have lost,
we will grieve the life we used to live,
the life we wished we were living,
the life we always thought we would live,
the life we feel others think we should be living.
We cannot rush the grief, nor the ability to know that this is our life for now.
You cannot rush the grief, nor our ability to know that this is our life for now.
But go through it we must.
If we are to survive.
So to my friends ‘The Well’ I say, we ‘The Presently Un-Well’ need you.
We need you in as many different ways as there are people who are un-well.
We cannot decide how you will fulfil this need
nor can you decide how we need you.
But not to ask,
and again and again,
would be the worst for us.
And maybe for you too.