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Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
This is a brilliant, profound and moving piece by former journalist Lucy Mayhew. It made me cry in places but it's uplifting too. It's been a great year for pieces about living with ME (not to mention brilliant pieces about this illness more generally - thanks, @charles shepherd - and research - thanks David Tuller and more) and perhaps this is the finest.

Living with chronic fatigue: How I wish my friends would treat me (Daily Telegraph)
Lucy Mayhew

Bear Grylls and I have virtually nothing in common – the survival expert has a GTI turbo-charged body, whereas seven years ago, mine became my jailor.

Grylls recently name-checked kindness as an overlooked quality “critical to survival,” and in the midst of paralysing physical pain, fear and despair I have learned how true this observation is. But also, because compassion doesn't cure suffering, it is absurdly easy to neglect precisely when it is most urgently needed.
...
St Augustine said that physical pain was the greatest evil and he was right. I didn’t have a humour bypass or decide it might be diverting to become a hermit for almost a decade. I am extremely fond of life but this version needs returning to sender.
...
Five practical ways to show compassion to someone who is continually ill [expanded in the article]
  1. Be patient, and constant
  2. Share your life
  3. Be sensitive
  4. Avoid belittling commentary
  5. Show you believe
It's quite a long piece and I've only quoted a tiny amount, but I would say it's well worth the effort.

Thank you, Lucy Mayhew
 
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hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Thank you for posting this @Simon. It has made me feel sad about some of my own friendships....but has also reminded me of the kindness of people , who I did not consider to be particularly close friends before I was sick, who have been supportive and helpful. As Lucy says in the article, it is hard work to support us steadily and witness our suffering and loss, for some people that is just too much.
 

duncan

Senior Member
Messages
2,240
Agreed. I suspect it was a decision made by an editor, but I'm just speculating.

Still, using chronic fatigue is inaccurate. Yes, it is misleading, and yes, that bothers me. What should bother the paper, though, is the inaccuracy.
 

Aurator

Senior Member
Messages
625
If I was an uninitiated reader, the headline would make me temporarily suspend my sympathy for the person featured in the article. I'd be left thinking: "rather than focus on the way her friends treat her why doesn't she just make healthier life choices to avoid being chronically fatigued?"

If I could be bothered to read on I'd get to the passage "There is no tidy diagnosis or cure for my complex immune and gastrointestinal condition. It has most in common with the severest cases of Chronic Fatigue Syndrome" and probably conclude that at best this person was suffering from a self-diagnosed imitation of an already nebulous illness, and could scarcely be considered genuinely ill at all.

I've no doubt Lucy's version of events was very different from that served up by the newspaper, but the pictures of her beaming radiantly in the doorway and beaming again in trainers and a vest against an idyllic backdrop while snatching a quick breather during her morning workout would only leave me feeling even more at a loss to know what exactly was wrong with her; less sympathetic readers would probably already have a distinctly uncharitable answer to that question.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
The editors clearly don't get it. Did they even read the story? Stuffing the article into the "Lifestyle | Women" category is just unforgivable. I feel bad for the author who worked so hard on it. She is right to be upset.
 

Dolphin

Senior Member
Messages
17,567
From MEA Facebook page:

LUCY SENT ME THIS NOTE TODAY:

Dear Tony,

Prior to collapsing with severe ME/CFS in 2008 I was a journalist for the national and London newspapers - today I have a piece in the Daily Telegraph and am sharing it with the ME Association in case it is of interest and/or you would like to share it in any way.

I find the headline extremely uncomfortable but that, along with a few incorrect and slightly cringe-worthy edits, is probably a more personal reaction and overall I very much hope it may be a helpful feature for fellow sufferers.

Best wishes

Lucy
 

duncan

Senior Member
Messages
2,240
I feel very badly for her. She wrote a compelling and evocative story; I thought it was very, very good. She clearly knew intimately not just her own experiences, but the jargon and appropriate terms. She would not have made the chronic fatigue gaffe in the headline, imo.

And yes, overall, it was successful, I thought, at conveying the misery that hounds patients' everyday - both physically and emotionally as medical and societal outcasts.
 

Large Donner

Senior Member
Messages
866
Why as a former journalist would she get photographed on a park bench in jogging gear? Surely she would know how that would come across when trying to explain the nature of a serious Illness that has so many disbelievers?
 

Aurator

Senior Member
Messages
625
Surely she would know how that would come across when trying to explain the nature of a serious Illness that has so many disbelievers?
I think all of us at times find it hard to see things through the eyes of uninformed onlookers who know little or nothing about ME/CFS, and on balance this story is unlikely to have done us any favours.
 
Messages
14
MODERATION NOTE: Lucy's post below was originally posted in a separate thread.

Here is an article I wrote on the unceasing need for compassion, kindness and emotional support is in today's Daily Telegraph. I hope it might resonate and/or be helpful to share with friends and loved ones who sometimes think all input is useless because they don't have the answers. (This is very much not the headline I'd choose but I hope may touch or help in some small way)
It can be read here http://www.telegraph.co.uk/…/living-with-chronic-fatigue-h…/ Feel free to share if at all appropriate or helpful.
 
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Messages
14
This is a brilliant, profound and moving piece by former journalist Lucy Mayhew. It made me cry in places but it's uplifting too. It's been a great year for pieces about living with ME (not to mention brilliant pieces about this illness more generally - thanks, @charles shepherd - and research - thanks David Tuller and more) and perhaps this is the finest.

Living with chronic fatigue: How I wish my friends would treat me (Daily Telegraph)
Lucy Mayhew


...

...

It's quite a long piece and I've only quoted a tiny amount, but I would say it's well worth the effort.

Thank you, Lucy Mayhew
Thank you so much for your generous
This is a brilliant, profound and moving piece by former journalist Lucy Mayhew. It made me cry in places but it's uplifting too. It's been a great year for pieces about living with ME (not to mention brilliant pieces about this illness more generally - thanks, @charles shepherd - and research - thanks David Tuller and more) and perhaps this is the finest.

Living with chronic fatigue: How I wish my friends would treat me (Daily Telegraph)
Lucy Mayhew


...

...

It's quite a long piece and I've only quoted a tiny amount, but I would say it's well worth the effort.

Thank you, Lucy Mayhew
Thanks Duncan - my heart sank and stomach flipped when I read the title - personally very awkward & embarrassing in terms of the accusatory tone to my friends and, of course, infuriatingly calling it term chronic fatigue. Headline writers - agh! I did requested it be changed straight away but was told no.
Thank you so much Simon for your generous words and for, instinctively knowing that I am not the headline writer. Such a frustrating shame but hopefully the content is more postively resonant for fellow sufferers! Thanks again Lucy
 
Messages
14
If I was an uninitiated reader, the headline would make me temporarily suspend my sympathy for the person featured in the article. I'd be left thinking: "rather than focus on the way her friends treat her why doesn't she just make healthier life choices to avoid being chronically fatigued?"

If I could be bothered to read on I'd get to the passage "There is no tidy diagnosis or cure for my complex immune and gastrointestinal condition. It has most in common with the severest cases of Chronic Fatigue Syndrome" and probably conclude that at best this person was suffering from a self-diagnosed imitation of an already nebulous illness, and could scarcely be considered genuinely ill at all.

I've no doubt Lucy's version of events was very different from that served up by the newspaper, but the pictures of her beaming radiantly in the doorway and beaming again in trainers and a vest against an idyllic backdrop while snatching a quick breather during her morning workout would only leave me feeling even more at a loss to know what exactly was wrong with her; less sympathetic readers would probably already have a distinctly uncharitable answer to that question.
Oo
Why as a former journalist would she get photographed on a park bench in jogging gear? Surely she would know how that would come across when trying to explain the nature of a serious Illness that has so many disbelievers?
Apologies for the understandable offence of both the headline which I begged to have changed the moment I saw it and for the photographs. I was asked to supply photos of me 'Before' my illness. I had precisely three having lost all my backed up photos and two were poor quality so, though they ended up being used, I did not expect them to be.

The article running was the most important thing and without photos it would not have run at all.
Like all who are bedridden, I yearn with every atom of my being simply to be able to leave my bed, get dressed, wash my hair, and, most of all, get downstairs and outside into the fresh air once more.

As it stands none of these are possible and hopefully the content makes that clear.

Had current photos been suggested to me, which they were not, I would have refused partly due to vanity and pride over an appearance I cannot keep up but overridingly because there is no way I could stick to any appointment due to the unpredictability of excruciating different pain attacks and so much more, as I am sure will be understood.
One cannot have this illness and not know the near-palpable ache to be able to walk and yes, run/jog, dance and so much more. I can only agree that the relative lack of unambiguous explanatory photo-captions do not make it plain these are photos are almost a decade old and represent a time when life was still being lived.
 

Richard7

Senior Member
Messages
772
Location
Australia
lulema

i have been struggling a bit trying to work out what to say.

I could criticise the article for being a little fuzzy, I don't really think you got wherever you wanted to go with the stuff about the importance of compassion. It seems a series of statements rather than a clear argument.

But Journalists who are well and not seeking to please editors have these problems too, and I do not see any other problem with it.

Your story is relatable and I cannot see a problem with it being so related.

I don't see you as saying that your experience is the one true experience of ME/CFS. Indeed you are broadening it out to be an experience of chronic illness

I think it a useful piece in the light of all the anti-disability propaganda and sentiment we are subject too. I think it useful in the light of the longstanding pro-disabled (as long as you're unusually lucky and capable, need no assistance and are "contributing to society") propaganda too.

I am glad that you focus on the human issues of what it is like to be chronically ill and of how to be a friend to someone who is chronically ill.

I am always rather put off by the economic arguments people seem compelled to make for why the wider community has a stake in us getting well. They contain, after all, the implication that it would be ok to abandon any disabled person or group on which the wider society could not turn a profit.

I think that the photos - though inaccurate - do work in well with your comment about people thinking that you look fine so you must ok.

I really hope that you find some solution or partial solution that helps with the pain (and everything else of course).

Thanks for the article.