I think I'll write something about things not to say to someone who is
the parent of a person with cancer. People are usually fantastic but
find it sometimes irresistible to tell me horror stories which I frankly
do not need.
I'm also interested in Mindfulness in relation to serious illness and in
the disability v illness debate from medical -social model perspective.
My son has cancer-I want it cured-end of.
Nicola Martin
Head of Disability and Well-being Service
London School of Economics and Political Science
Houghton Street
London
WC2A2AE
02079556034
[log in to unmask]
https://www.jiscmail.ac.uk/dern
Click on the link above to join the LSE Disability Equality Research
Network (DERN)
-----Original Message-----
From: Allan Sutherland [mailto:[log in to unmask]]
Sent: 25 April 2012 12:19
To: Martin,N; [log in to unmask]
Subject: Re: 10 things not to say to someone when they're ill
I agree, I think it's an excellent article, and applicable to much more
than
cancer.
I have my own list of 'things not to say to someone who has epilepsy',
but
it boils down to Deborah's core point of 'it's not, not, not about you'.
I'm not sure I'd be as understanding as she is in her final paragraph.
All the best
Allan
Allan Sutherland
Read 'Neglected Voices', four cycles of transcription poems by Allan
Sutherland, based on interviews with disabled people.
http://www.disabilityarts.org/Neglected-Voices
----- Original Message -----
From: "Nicola Martin" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 25, 2012 11:25 AM
Subject: FW: 10 things not to say to someone when they're ill
Subject: 10 things not to say to someone when they're ill
I think this contains some useful advice-apologies if you think it's not
relevant.
Nicki
-----Original Message-----
From: Martin,N
Sent: 23 April 2012 00:16
To: 'Disability Equality Research Network DERN'
Subject: 10 things not to say to someone when they're ill
To see this story with its related links on the guardian.co.uk site, go
to
http://www.guardian.co.uk/lifeandstyle/2012/apr/18/10-things-not-say-whe
n-ill
10 things not to say to someone when they're ill
When I was diagnosed with cancer, the support of my friends was
invaluable ? but I also learned that there are 10 things you should
never, ever say to someone when they're sick
Deborah Orr
Thursday April 19 2012
The Guardian
http://www.guardian.co.uk/lifeandstyle/2012/apr/18/10-things-not-say-whe
n-ill
What no one ever tells you about serious illness is that it places you
at the centre of a maelstrom of concerned attention from family and
friends. Of course it does. That's one of the nice things. It's actually
the only nice thing. But it's also a rather tricky challenge, at a time
when you may feel ? just slightly ? that you have enough on your plate.
Suddenly, on top of everything else, you are required to manage the
emotional requirements of all those who are dear to you, and also,
weirdly, one or two people who you don't see from one year to the next,
but who suddenly decide that they really have to be at your bedside,
doling out homilies, 24 hours a day. It's lovely to hear from people
when you're ill. But it's also lovely when they add: "No need to reply."
The biggest shock, when I was diagnosed with cancer the summer before
last, was quickly observing that people can be quite competitive in
their determination to "be there for you", and occasionally unable to
hide their chagrin when some other chum has been awarded a particularly
sensitive role at a particularly sensitive medical consultation. Nobody
means to be intrusive or irritating. It's all done with the finest
intentions. But, God, it's a pain. Yet by not saying 10 simple things,
you too, can be the friend in need that you want to be.
1 "I feel so sorry for you"
It's amazing, the number of people who imagine that it feels just great
to be the object of pity. Don't even say "I feel so sorry for you" with
your eyes. One of my friends was just brilliant at mimicking the
doleful-puppy-poor-you gaze, and when I had been subjected to a
sustained bout of it, I used to crawl over to the local pub for lunch
with him, just so that he could make me laugh by doing it. Don't say "I
feel so sorry for you" with your hand either. When someone patted my
thigh, or silently rested their paw on it, often employing the
exasperating form of cranial communication known as "sidehead" at the
same time, I actually wanted to deck them. Do say: "I so wish you didn't
have to go through this ghastly time." That acknowledges that you are
still a sentient being, an active participant in your own drama, not
just, all of a sudden, A Helpless Victim.
2 "If anyone can beat this, it's you"
Funnily enough, it's not comforting to be told that you have to go into
battle with your disease, like some kind of medieval knight on a
romantic quest. Submitting to medical science, in the hope of a cure, is
just that ? a submission. The idea that illness is a character test,
with recovery as a reward for the valiant, is glib to the point of
insult. Do say: "My mum had this 20 years ago, and she's in Bengal now,
travelling with an acrobatic circus." (Though not if that isn't true.)
3 "You're looking well"
One doesn't want to be told that one's privations are invisible to the
naked eye. Anyway, one is never too ill to look in a mirror, and see a
great big moon-face, bloated with steroids and sporting the bright red
panda eyes that are triggered by that most aggressive and efficient of
breast-cancer drugs, Docetaxel. I knew I looked like death warmed up,
not least because I felt like death warmed up. Nobody wants to be
patronised with ridiculous lies. They are embarrassing for both speaker
and listener. If your sick pal wants to discuss her appearance, she'll
ask you what you reckon. It'll be a leading question, so take your cue
from her.
4 "You're looking terrible"
I know it sounds improbable. But people really did feel the need to
reassure me that my hideousness was plain to see. One person told me
that while I'd put on a lot of weight, I'd of course be able to go on a
diet as soon as I was better. I wouldn't have minded quite so much, if
she hadn't arrived bearing a giant mound of snacks and cakes, a great,
indiscriminate pile of stuff that suggested she'd been awarded four
minutes in Whole Foods by Dale Winton, in a nightmarish haute-bourgeois
version of Supermarket Sweep. And, in fact, I haven't gone on a diet.
Somehow, being a size 10 doesn't seem tremendously important any longer.
On the other hand, when I said: "Don't I look monstrous?" I was asking
people to help me to laugh at myself ? which many did ? and to tell me
that this too would pass. One of my friends took photographs of me,
behind a curtain in the hospital, looking comically interfered with by
surgeons, and festooned with tubes and drains full of bloody fluid. We
laughed so much that I probably came nearer to death right then than at
any other point.
5 "Let me know the results"
Oddly, one doesn't particularly want to feel obliged to hit the social
networks the moment one returns from long, complicated, stressful and
invasive tests, which ultimately delivered news you simply didn't want
to hear. Of course, this request is made because people are worried.
But, a bit of worry is easier to bear than the process of coming to
terms with news that confirms another round of debilitating,
soul-crushing treatment. If people do want to talk about such matters,
they really need to be allowed some control over when, how and to whom.
Contacting their very nearest and dearest instead is fine, as is
volunteering to spread the bad tidings to others who are also anxious.
6 "Whatever I can do to help"
Apart from anything else, it's boring. Everybody says it, even though
your assumption tends to be that people do want to help, of course. That
doesn't mean that help should not be offered. But "Can I pick the
children up from school on Tuesdays?" or "Can I come round with a fish
pie and a Mad Men box set?" is greatly preferable to: "Can I saddle you
with the further responsibility of thinking up a task for me?" If you do
happen to be on the receiving end of "whatever I can do to help", be
shameless. Delegate with steely and ruthless intent.
7 "Oh, no, your worries are unfounded"
Especially when those worries are extremely founded indeed. Like a lot
of women, when I was first diagnosed, I was disproportionately focused
on the prospect of losing my hair. One friend, every time I tried to
discuss this with her, would assert ? baselessly ? that this wasn't as
likely to happen as it used to be. Actually, it's still very likely, and
indeed it came to pass. But the crucial thing was this: I didn't want to
talk about how pointless it was to be fearful. I wanted to talk about
how sorely I dreaded the day when I was bald. When people want to talk
about their fears, they want to talk about their fears, not to be told,
quite blatantly, that their fears are imaginary. Even when they are
imaginary, there are more subtle ways of offering assurance than blank
rebuttal. Usually, an ill person brings something up because they feel a
need to discuss it. Denying them that need is a bit brutal.
8 "What does chemotherapy [for example] feel like?"
It is staggering, the number of people who find it impossible to
restrain their curiosity. Swaths of folk appear to imagine that exactly
what you need, in your vulnerability, is a long and technical Q&A
during which you furnish them with exhaustive detail pertaining to the
most shit thing that's ever happened to your body in your life. If
someone wants to talk about their procedures or their symptoms, they
will. If you have to ask questions, that's prima facie evidence that
this is not what they'd discuss, if only they could be gifted with just
a smidgeon of control over the conversational initiative. Again, the
golden rule is: take your lead from the person undergoing the
experience. I tended to want my mind taken off all that stuff, and have
a nice chat about nice things. One of my friends, asked by another what
she had been up to lately, found herself saying she'd had a great
time visiting Deborah in hospital after her mastectomy. It had indeed
been a lively visit. Eight lovely people had turned up all at once, and
it had been quite the rambunctious gathering. When she told me that it
had been an absurd social highlight for her, I felt
fantastically proud.
9 "I really must see you"
Don't say it, particularly, if you are then going to indulge in some
long and complicated series of exchanges about your own busy life and
the tremendous difficulty you have in finding an actual window, even
though this appointment is so awfully important to you. At one point, I
was sitting in a chemotherapy suite, large and painful cannula in the
back of my hand, pecking out texts to somebody who had to sort something
out this week, and wouldn't take "Let's do this later" for an answer.
When I reluctantly picked a particular time from the list she had
bossily pinged over, she replied that she'd have to bring her toddler
son with her if it really had to be then. I knew I couldn't handle a
tiny visitor (and wasn't sure about the ability of the tiny visitor to
handle it either), so we then arranged something else. A few days later,
at the very time of predicted childcare crisis, I saw a tweet from her,
declaring that she was wearing a new cocktail dress and held up in
traffic on her way to a long-anticipated and very glamorous do. She had
clearly just buggered up her dates and didn't want to say: "Whoops.
Actually, I'll be at a PA-A-ARDEEEEE." Fair enough. Sweet, really.
Nevertheless, the planning thing is an arse. I liked it when people just
said, "Can I come by after work this evening?" or, even better, "I've
got tickets to the theatre on the 25th. Tell me on the day if you can
face it."
10 "I'm so terribly upset about your condition"
One friend, when I told her the initial news, blurted out: "I can't cope
without you!" and unleashed a flood of tears. (I hadn't sobbed myself
at that point. I never did.) Ages later, when she emerged from the loo
at the pub I had designated as Telling People HQ, she explained that
she'd been caterwauling unrestrainedly when a kind lady asked her what
was wrong. Having sketched out her troubles, she got this reply, or
something like it: "What? You're weeping in the lavatory, while your
friend is in the bar having breast cancer? Pull yourself together, and
get out there." This had inspired another torrent of waterworks. And
that is the most important thing to remember, when your friend is facing
a frightening and possibly fatal illness: it's not, not, not about you.
If you're too upset to be in a position to comfort your friend, send
cards, send flowers, send presents. But don't send your ailing chum a
passionate storm of your own wild grief, personally delivered. It's a
little too needy, under the circs.
If you recognise things that you have said or done yourself within this
list, don't feel bad about it, at all. I most certainly have, and I've
said and done much, much worse too; it took being on the receiving end
before I realised what it could feel like. The thing is this: giant
illness is a time of great intensity, and even the most cack-handed
expressions of support or love are better than a smack in the face with
a wet tea-towel. People feel helpless when they see that their friend is
suffering. Sometimes ? often ? they say the wrong thing. But they are
there, doing the best that they can, at a terrible, abject time. That's
the most important thing of all. I look back on those grisly moments of
ineptitude and clumsiness with exasperated amusement and tender,
despairing, deep, deep fondness. The great lesson I learned from having
cancer, was how splendid my friends were, whatever their odd little
longueurs. They all, in their different ways, let me know that they
loved me, and that is the most helpful thing of all. I'm so lucky to
have them.
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