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IT's A FUNNY OLD WORLD

Humour and ME

"In matters of public interest, satire and cartoons have the power to diffuse anger and violence and from that point of view, certain members of your profession have cause to be grateful to the authors and artists who have made good use of the rich material arising out of one medical scandal after another. This relates in particular to the psychiatric field."

-Gurli Bagnall, 2007


One thing we shall never lose sight of is the tragedy of ME and the urgency that is required to find solutions.
However, with a disease such as ME humour can sometimes help in balancing the absurdity of the patient’s situation with hope for a better way forward.

When the establishment organisation responsible for using public funding to research diseases such as ME has failed consistently (influenced by vested interests), where the Department of Health and Chief Medical Officer avoid taking any responsibility for treating the disease with any serious action and where successive health ministers do not even register the disease on their worklist of important subjects – then what is left for a patient or their family to do?

All of the above, of course, influences how many healthcare professionals still continue to view and treat the disease – sometimes showing an immense talent for ignorance and insensitivity that might be candidates for some record book, were it not for the negligence that it so clearly illustrates.


Increased knowledge and education are weapons that the patient community can use to counter this.
Humour may be used, ever so slightly, to help one deal with it.

In 2013 IiMER published a set of cartoons from an ME patient - looking at the ridiculous and the sublime in medicine and psychiatry.

Click here or on the image

Slide through the cartoons or wait for them to move automatically (warning - contains reference to the #PACEtrial)



Humour can be unintentional - with the written word being so ridiculous that it is sometimes difficult not to laugh.

We found one, supposedly serious article on ME, to be so risible that it bordered on funny - from Chronic fatigue syndrome: Neurological, mental or both - published in Journal of Psychosomatic Research - Article in Press. Author: Professor Michael Sharpe - for which we give grateful thanks and acknowledgement.

So we used the licence of satire and adapted it - It's a Funny Old World http://www.investinme.org/Article-501%20Its%20a%20Funny%20Old%20World.shtml

However, one would have to read the original article to understand - perhaps not recommended.


In the Journal of IiMER we often added quotes from people with ME - stories of real life with ME from people who are living with this illness on a daily basis, showing the tragedy and the courage which people with ME and their families endure.

Some examples here - not meant to be humourous - yet the ridiculous situation shows a humour in the absurdity -







Here, thanks to Ali Head and friends, are a selection of quotes from patients who have been on the receiving end of some awkward, some ridiculous, some incomprehensible and some just downright stupid observations from healthcare staff – and others. Not funny - but one has to laugh

A Funny Old World


“well, I'm going to have to give you the CFS diagnosis. But no employer will want you.”

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“well if you don't follow your GET/CBT plan it means you want to keep yourself ill”

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GP: "ALL my patients complain of tiredness".
- Exactly. Doctors & patients need diagnostics for this disease

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"there's no such thing as CFS"

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After neg bloodwork: "I've tested you for everything I can treat." - Infectious Disease Specialist

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“Oh dear you must be very tired...”

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Follow up with Gastroenterologist 'U need to take a step back and address your mental state'

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"Well a lot of that will be because of your weight"

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At cardiologist for myocarditis, cardiomyopathy, POTS, - ''so you're here because you're fatigued? 3x week sport will cure you!”

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Psychotherapist when challenged "WE think it's something in your PERSONALITY that keeps you ill" (tied to 'benefits' situation)

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GP: “I don’t think there is anything wrong with your heart, You Just have ME
GP: but I don’t believe in ME”

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“finally going to GP due to worsening symptoms from consistently overdoing it & being referred for GET for deconditioning”

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"No illness could be that complicated - you must have imagined it!"
- I wish . . . . ! !

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Doctors attributing any new symptom to your ME diagnosis, making them miss other ailments/illnesses f.ex. breast cancer

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Apparently my fibromyalgia is caused by childhood trauma, according to ME clinic psych.

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At ME clinic with psych. I told of woman who died from ME. She replied "no one dies from fatigue”

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My GP often dismisses my symptoms and labels me with health anxiety.
Who wouldn't want answers to symptoms?

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I asked about possible POTS diagnosis, GP told me no point in testing as it’s just another label with no cure.

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Why don't you just go for a run around the block!

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In a consultation with my GP, she said: "Shall I pray for you? We could do it now!"

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“You just have an atypical depression”

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“The death of your boyfriend is probably holding you back to full recovery.”

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“I suffer with Fibromyalgia & M.E. One Dr told me it doesn't exist.”

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"I can try you on these new meds and if they help you I can try them on my other ME patient".

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“Part of it is that you're getting older too! (Thanks, I'm 53 not 73. I see old people more fit than I am.)”

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“You def have a fatigue/pain syndrome but I don't want to label you".
(Thanks, my boss will love that)

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"You either choose to get better or continue to live like this"
Rheumy said this to me. I have ME&fibro

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“So how is your relationship with your parents?”

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"I am completely baffled by your symptoms" one of the more honest Drs.

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“Do you believe in ME?” – Psychiatrist

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"It's mind over matter".
If only I'd known, I'd have thought myself better years ago!

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"Well ME and Fibro are all just terms for pain and fatigue that is unexplained, I can't help you"- neuro!!”

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"Everyone gets tired. You need to push through it."
Went from moderate to severe within weeks...

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"I've never heard of ME. I'll google it"
- Medical Assessment Unit doc trained in Ireland

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When asking if anything could with excessive sweating. "No it's just the chronic fatigue"

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"You need to see a psychiatrist"
Went to psychiatrist, got clean bill of MH "
It was psychotherapist I meant"

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Neurologist; "FM? That doesn't exist, neither does that other thing what do you call it? ME?"

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"People who work here think it’s a mental illness" (CFS clinic)

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"The only thing I know about ME is Graded Exercise Therapy"
Said by neurologist 2016 - After 29+ yrs of ME

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I have great life, great job, boyfriend, I just don't feel well;
"Cause of her CFS is depression"

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“I'm not sure how to help you.... Why don't we try antidepressants??”
- But I'm not depressed

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"Oh I don't like to refer people with ME or fibro for wheelchairs as I believe it makes them lazy"

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“Having ME might be "inconvenient" but there is really nothing I can do”

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“No, no children get ME” ...suggesting it's a psychosomatic adult illness.. ”go home and do some exercise.”

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A UK specialist told me to "Get a boyfriend and an active sex life, if you want a cure"
- NHS have left me to rot for 12 yrs!

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'You have the right attitude to get over M.E'
I've still got the same 'attitude' years later, I'm still ill

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“I don't "do" fatigue, I hope you grow out of it”
- consultant immunologist

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"you’re listening to your body too much”

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" you’ve had glandular fever but you’re well over it now "

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I was seeing a specialist for something else and I mentioned it and he said " oh come on don't give me that"

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“Why don't you try actually going to the gym.”

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“When are you going to pull yourself together get off antidepressants and get back to work”

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Come back and see me when your head is spinning and you're spitting blood like in operas

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“There’s no such thing as me/cfs it’s just another fancy word for tiredness and that’s what you have go”

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'If blood tests don’t show anything we'll assume you have ME’

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"I'm old school. I don't believe in these new mumbo jumbo illnesses, you're lazy and want time off work"

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“When you feel a bit tired you mustn't give in to it. GP after I'd had ME for years and had to give up work”

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Very recently: “No one at the Surgery is experienced with dealing with it (CFS) because it's a rare condition”

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“None of the GPs in this practice are interested in taking you on as a patient because you say you have ME”

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"Have you tried any exercise?"

(The stairs?? And once a week a bath I nearly die after)


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"You have a high heart rate but we don't know why"

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One GP I saw said to me get a full time job and a husband and you will be fine!!!! So in my head I leapt across the table and bitch slapped her!

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“It's all stress related work, on your inner issues” (only stress was no answer or help being seriously ill)"It's anxiety" (No it's really NOT)

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"You have caused your condition of CFS by choosing to lie in bed for years"

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'all teenagers get tired and you're probably lazy too, there's nothing wrong with you'

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“At age 16, "have a baby, a good shake up of your hormones should sort it." I had a baby in my late 20's guess what - it didn't sort it.”

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“6 years ago, (10 years into having M.E.), I had a bad relapse, bedridden.
Doctor was called for a home visit; it was the doctor who had given me my initial diagnosis.
He said "oh, I thought you were better, M.E. usually goes away by itself after 2 years"
....It took almost 2 years before I received the diagnosis, did he think once he'd told me what it was it'd go away?
Doh!! Needless to say, I've since changed doctors.”

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"Probably just an adolescent pre occupation with health"

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"What do you expect, you ARE middle aged?" I was 38

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DWP Doctor in 1994 "Were you attending church when you developed ME?"


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References

  1. MEDICINE and ME - looking at the ridiculous and the sublime in medicine and psychiatry

  2. It's a Funny Old World - Another interpretation of ME





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