When you are ill and in hospital you
are vulnerable, even the most vocal amongst us can be silenced. Someone once
described it to me as ‘white coat syndrome’ but it’s more that. I have to put
myself into this picture to convey what I see every week or have heard so often
or read in the comments I receive from surveys about patient experiences.
Imagine yourself sitting in bed in
your pyjamas. Straight away there is vulnerability, I don’t know about you but
clothes are my barrier. When I go to meetings where I need to show I am a
strong CEO, I try to dress to impress; full battle make-up on. When I am collecting
the children from school, the casual look; clean, tidy but nothing to embarrass
the children. When on a night out; fashionable but age appropriate. Then when
at home relaxing or sleeping maybe my pyjamas. However, would I want to be seen
in public dressed like that? Despite current trends in Ireland, no. But here I
am in a public place, a hospital ward in my pyjamas feeling sick – no
protection. People I don’t know, nor am likely to meet again are sleeping in
the same room and there’s no privacy.
Healthcare professionals who more
often than not are so busy they forget or wont introduce themselves or when
they do they use words like SHO Registrar, phlebotomist, cardiac technician,
clinical nurse manager – all relevant titles but what do they mean to me
sitting in my bed? I’m not feeling well, I don’t know really what’s wrong, I’m
told I’m getting bloods done and an x-ray, but why? For what? And when? What will it tell me about why I
feel bad? Am I just another case to you? Or am I a person with a name?
I feel self-conscious. I know people can hear our conversation so how
can I tell you I’m afraid or I don’t understand what’s going on or that I can’t
hear your hushed tones because I am losing my hearing. Nobody wants to admit
they don’t understand. Or maybe yes I understand the blood test but what are
you looking for, why is it taking place? What will it tell you? What will you
be able to tell me as a result?
Now it is busy. You rush in. I’m up
for breakfast at some ungodly hour considering I hardly slept will all the
commotion of the night. The ward is a very busy place. Like in all jobs, there
are those that are enthusiastic and love their work, those who are doing it for
the paycheque and those who strive to do their best in highly resource constrained
conditions. I’m still in bed watch the hustle and bustle. Maybe I am
constrained to bed or told to sit in the chair beside my bed. If I need to use
the bathroom I lay here to wait until someone can bring me or worse still to
use a bed pan-the humility of it, can you feel mine? Needing someone to help me
with something I have done for myself since I was a child – the tears sting my
eyes but I try to retain my dignity and composure.
I am told I am going for a test but
not sure when so I start the waiting game. Am I to fast? Who knows – ah sure
lets fast then just in case. No sign of anyone coming to bring me for my test...
everyone is eating lunch now, still no news.
If I am lucky enough to have family, they have
most likely rung me several times to find out what’s happening. They do their
best to visit and spend time, but now I feel I am a burden. I watch the clock
for visiting times to see will someone come. Can my husband get a bus here?
Will anyone have the time to visit with everything that is going on? The children
need to be looked after, they’re under 12 so no chance of seeing them for the
next few days/weeks. I don’t spend much time apart from them so now I am
lonely.
If I am elderly I think to myself it
could be worse. My children will hopefully have a job and their own children
and their own busy lives. Children or none, either way I might watch the clock
tick slowly past visiting hours with no one coming to see me. Or sometimes in
the evening one of my children will come straight from work and pass a few hours
with me, most likely asking me what happened today, what tests, what news, was
I told. How much do I say I don’t know? I didn’t know quite how to ask or
understand what the clinicians were saying to me?
It goes on like this for a few days
and you start to look forward to the small things sent your way; the smile from
a nurse who arranges your bed and asks how you are? Fine you say. We talk about
the weather; the catering staff who come
and give you a real cup of tea and the way you like it, with only a drop of
milk, because they listened to you; the clinician who introduces themselves by
their name first and then explains not their title but where they fit in in the
scheme of things; the ones who sit and actively listen or who watch for the
signs, like the hesitant pause I take as I wait to ask a question and the
confused look on my face they rely on when I do understand. Those who give me
the time to absorb and adjust – the ones who see me and not just as case A with
conditions X & Y.
So what is compassion to me?
It’s the willingness to see me as a
person, to understand I am here not because I want to be but because I have to
be. It’s the seeing that at this time, this is not a true reflection of me. It’s
the understanding that I am facing some of my fears, worrying about my dignity
and respect, and above all when I am not well.
Compassion for me is summed up by
the reassurance that you will do your job professionally and safely but whilst
caring for me with dignity, respect and above all that you will treat me as you
yourself would like to be treated if you were in my position.
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