Having read the new CDC’s CFS toolkit she developed a new kind of fundamental resistance against analytic psychotherapy. Any ideas, Dr. Simon? At the Ouch website there is currently a new TopTen related to M.E.
http://www.bbc.co.uk/ouch/play/topten/
Having read it I was trying to think up ten things of my own not to say to a PWME(with response --- spoken or otherwise --- in blue )
1. I bet you enjoy having more time at home: all that time to catch up on things
Yes I love being stuck in the same place, day in day out when I used to have a life and some freedom. I've caught up with all I want to thank you
Yes I love being stuck in the same place, day in day out when I used to have a life and some freedom. I've caught up with all I want to thank you
2.You need to build up your stamina.
You need to s*d off
3.Try walking a little further each day
I've tried that. There's actually a medical term for it called GET. It nearly killed me. Why don't YOU 'GET' off your behind and do the same if it's so good for you
4.What did you used to do ?
I used to do a job that was useful, brought in money, gave me a sense of fulfilment and usefulness. Thanks for reminding me: just the boost I needed
5.What did you used to be ?
Well the last time I looked I used to be an adult human being like you but maybe I'm not human anymore since you're speaking to me like a 5 year old alien
6.It's your own fault. If you hadn't.......
Well, that's as maybe (though doubtful) but maybe it's your own fault that you're drunk/ignorant/cruel/a busybody
7.If I were you........
Similar response to No.2
Similar response to No.2
8.You're depressed........
You're 'sad' within the confines of contemporary lingo
9.You need to find an interest........
I've got one and it's not you, so please go away
10.Have you tried ..........?
If its been recommended by a Doctor, Health magazine, self-help book, alternative practitioner, well-meaning stranger and has cost me money, further decline of health, pain, frustration I probably have tried it. Kind though it is of you to suggest 'x' I have to decline your suggestion. Thank you and goodnight.
I have to point out that I have never uttered any of these responses, being a well brung child of the 50s but I have certainly thought them when feeling bitter and twisted
23 comments:
I tend to keep my 'blue' one liners to myself, when a stupid person says something real stupid.
Maybe we should both try saying out loud our own 'blue' liners one day eh? Wonder what reaction we would get?
K.x.
I want these plastered on a T-shirt to wear everytime I go to the doctors.
What used to get me was, 'your so brave' No I bloody wasn't, bravery is a choice. Cancer is not.
But I hope now as a result, apart from not tolerating fools i have actually got more aware of others needs, especially in 'the does she take sugar way'
Discrimination and ignorance are just not acceptable anymore.
px
Love all of these, and great to see them posted where you can respond (minor criticism).
I'm with Fluttertongue on doctors. Got a sick note back today. Anxiety and Depression.
"M.E Is MY Main Symptom!" I yelled. They redid it. Gruffly.
Oh - and may I add 'Sometimes I just don't feel like going to the gym' to the list. That was a prize comment from one of the aforementioned.
Ignorant Person: I think it's marvellous the way you manage to be so cheerful.
Me (thinks) : I think it's incredible the way you manage to be so crass and stupid.
Well thank you my dears for such a flurry of response. I never knew there was such seething and gritting of teeth. Sometimes I think it must just be me ! I know people mean well but, Gawd, it really sticks in the craw sometimes.
Dear Kahless, Well maybe if we did it in broadest Essex, like Romford Market traders ? Wadyafink darlin' ? (and no, that is not my usual speaking voice ... I am blessed with the mellifluous tones of Standard English with a smattering of Suffolk)
Dear Flutter, maybe I should start a line in T shirts ? They could be modelled lying down.
Dear Pixie, I know just what you mean about the brave business (having watched my Mum battle cancer twice) but with M.E. you don't even get that because being a lazy malingering psycho isn't interpreted as brave ;-).
Only time I got the 'brave' comment was when I fell and ripped out three finger nails ( I was feeling very giddy and 'distree' that day). It wasn't the blood and pain I was brave about. It was waiting in A&E for 4 hours to be treated with a certain sceptisicm and nuisance factor when I said I had M.E. I expect I was just imagining the lack of three nails and the throbbing and blood. A good course of CBT would've seem me right.
Oh Seahorse, I didn't realise you were a PWME too. Maybe I missed something over at yours (quite possible,as I'm quite foggy a lot of the time). I had the anxiety and depression Cert. thing for several months before I was properly diagnosed. The HR person at work kind of scoffed one day when I actually took the Cert. in by hand and said 'Oh, been feeling a bit sad and off colour have we ?' I nearly made her sad and off-colour e.g. an eye in a deep shade of black !
Dame Honoria, Welcome and I do hope you don't feel too out of place in such plebian surroundings. Yes, isn't it wonderful the way we all manage. Of course we could decide not to manage and sit in a heap and wail and moan and make our lives and everybody else's a complete misery. Those of us with children, parents, animals or other sentient beings we care for and love could ignore and abandon them so we could weep a little longer in order to garner a little more pity. Wonder what our commentators would say if we did that? So what choice do we have ? Get up, get on and make another kind of life.
O.K. So my responses to your comments reveal the more sour, bile-driven side to my nature but this is just between us in my little Salon, don't yer know.
Most of the time I'm my usual beatific self 0:-) .....anyone wondering: that little circle over my eyes is supposed to be my halo !
Blessings my brothers and sisters
Waddifink?
Fraid I still got Essex in my blood; in me bones.
Soufff-end dont seem to have left me. You know what I mean?
:o)
Oh my dear Kahless,
I'm sooo pleased you seem to still be in touch with your roots.
I do find it essential that one is faithful to the old County and can maintain the patois.
Toodle pip.
hey cusp, i think you are very benevolent in your suggested responses.
it is hard to explain to non-PWME just how wearying it is to have such widespread lack of knowledge/understanding of the illness.
if anyone had ever dared put anxiety/depression on my sicknote i would've committed murder i think.
x
I'm so pleased you keep popping back NMJ. Good to see you again.
You think I am benevolent !
Blimey --- that's me at my most vitriolic (I'm a quiet soul at heart, brought up in the love 'n peace era, man)
You say on your blog '...sometimes I'm angry' so I'd like to know what your responses would be to said stupid remarks. I await in trepidation and fear :0<
You might like This essay, which is a longer variation on the theme.
Dearest Cusp, I don't want to bring ranting and raving to your lovely blog, would be preaching to the converted anyway. (I truly think I externalised a lot of my anger re the illness when I wrote my book. When it comes out, it will give you an idea of how I would answer these comments . . .)
Re. 'sometimes I am angry', that really refers more generally to the terrible suffering in the world, which is so often caused by human stupidity & cruelty.
x
Ah, I see......well 'here, here' to that. I get very angry with all that stuff too.
I'm looking forward to your book coming out: how long do we have to wait ?
march 2008, a wee while yet . . .
hahaha! Cusp... you just tell those doctors to b---r off!
I've always been wary of doctors with a lot of advice and little understanding. Reminds me of an experience I had as a 12 year old, my first and last visit with a therapist... after about 15 minutes of questions from the therapist and stone silence from me, the therapist yells, "Okay, ENOUGH of this CRAP!" At that moment, I vowed I would never EVER see a therapist again.
Empathy is always good when wanting to reach, understand, and help another.
Loved your questions and answers, by the way!
love,
Ana
Cusp, I'm so glad you put this up. When I looked last I thought I'd been dreaming because I saw this list up, and then it disappeared for a bit. Anway, it's great - because many of these have been, and are still being said to me. Occasionally I will give someone the benefit of the doubt if I feel they genuinely mean well. But often I sense a kind of passive aggressive agenda in the background: as though my illness is too uncomfortable, too challenging and why can't I just stop having it so they can feel better. This, even though I rarely make M.E. a topic of conversation. But if asked I will tell the truth about it.
No Signs, you weren't dreaming. It probably was initially posted and unposted quite a lot. I had terrible trouble with the formatting on Blogger and every time I thought it looked OK I'd 'publish' it and it would look frightful so down it came again and I'd have another go. I don't know: these perfectionist tendencies !
I'm afraid you're right --- all too often all these things are said over and over. Nobody REALLY seems to get it unless they have it. I suppose it is very difficult to grasp.
On the whole I tend to avoid people who continue to level any kind of doubt at me. I can be quite ruthless as far as people go nowadays and if I think they sap my energy they have to go. I used to be a real people-pleaser but not anymore.
To be honest I think all PWME have a right and almost a duty to tell the truth about it or how will other people EVER understand what it is like. We have to play the broken record until they finally learn.
I'm so gald people have 'enjoyed' this post and I do find it a comfort to know I'm not the onlky one who mutters similar responses under my breath
Hi Cusp
I guess we've heard all those comments before, so often.
In respose to "if I were you I'd do ..... ", I say, "You're not me."
We once had a friend come round and in the space of the 5 minute she had to say hello to me. She managed to cover pretty much every single thing you just don't want to hear. It was so bad that it actually became comical to mum and I.(we need to get out more)
http://fromdowntherabbithole.blogspot.com/2006/01/acquaintance.html
I am personally working toward the day when I can voice those "blue" one liners with no remorse. Great list.
Hi Kay. Welcome to 'Cuspland'.
Thank you for your compliment about the list. I hope that you soon feel able to voice those retorts with no guilt or remorse whatsoever. There's no excuse for ignorance or lack of sensitivity after all.
Nice, or should I say NICE??
Dr Speedy.
from:
http://niceguidelines.blogspot.com/
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