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Share your dilemmas and get honest opinions from other Mumsnetters.

My partner doesn't believe my illness is real.

298 replies

coffeeoclock · 20/01/2020 16:51

Boyfriend and I are both early 20's, been together 3 years and lived together for 2.

I've been diagnosed (after a long battle for a year of going back and forth to the GP for tests!) with Chronic Fatigue Syndrome (ME). I've had the diagnosis for a year now and lately my health has been declining and I've really been struggling to get out of bed everyday before 5pm. If I get woken early or I try to get up early (as I've done many times) I will get very dizzy, have vertigo and be on the brink of collapse. My partner believes that part as he can see how white I go and that I need to lay down but he doesn't seem to believe that CFS is a chronic illness. He tells me to change my lifestyle and diet and that I just need a 'purpose' so I can snap out of it.

Fair enough regarding living a healthy lifestyle- I already do! I'm a slim size 8, pescatarian, drink loads of water and my blood-work always comes back incredibly positive and healthy.

It bothers me how he never has a sympathy. He seems to think I don't try or I don't want to get better. I've explained that I don't want to spend my life in bed exhausted unable to do anything but he doesn't think I try hard enough.

I can't work at the moment and claim benefits because of it and he hates that too. I do the majority of housework as he brings in most of the income even if I feel awful!

I've taken him to the GP with me and had the GP explain it to him but he doesn't trust doctors and thinks that you can heal your body with your mind and that doctors just want to keep us ill etc.

What can I do?

OP posts:
Broken2020 · 20/01/2020 20:42

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Retroflex · 20/01/2020 20:42

@Bread999 are you saying that Lyme disease doesn't exist now too? Hmm

Orangeblossom78 · 20/01/2020 20:43

academic.oup.com/occmed/article/55/1/20/1392403

Here is a link to one of the articles referred to on Wikepeda if you want to read it yourself.

wildcherries · 20/01/2020 20:43

ThereIsNoSuchThingAsRoadTax post at 17:08:11.

So much sense. Actually, there's a lot of sense on this thread. Living with a chronic illness is so hard, and you need to preserve your energy. Not use it to convince somebody, who doesn't believe you're ill, that you're worth his time.

Bread999 · 20/01/2020 20:48

@Broken2020 Lyme disease causing CFS is a fallacy. If reporting to the cyber police helps then go for it Xmas Smile

ColourMagic · 20/01/2020 20:48

Ok, well apart from Wike, the book I mentioned had quite a bit about people who had varying attitudes to their ME diagnosis and how this altered the course of their illness. it also had stuff about the placebo affect and how that works too. It was very interesting.
I understand this might not be of interest to others, but having a victim mentality mindset is sometimes not helpful, either. And we are all entitled to our opinions, even if they differ

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Actually you don't have the right to "an opinion" about serious disabling diseases you clearly know nothing about. ME/CFS is a World Health Organisation Classified disabling disease. It's not public property for imaginative gaslighting speculation.

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A list of Research publications which you will NOT find on Wikipedia:

d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1516736594/MEadvocacy_Website_ME_Science_Links_January_2018.pdf?1516736594

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fairlyplump · 20/01/2020 20:51

What a lovely supportive man! NOT! Sorry he sounds a childish, inconsiderate uncaring, selfish prick. Can you say what there is to love about him? He clearly doesn't have your best interests at heart as he would be supporting you rather than adding to your problems

Becca19962014 · 20/01/2020 20:53

My friends daughter died from this condition. It is on her death certificate. You have no idea how badly she suffered before she died.

This thread is becoming very distressing and upsetting and I will be hiding it.

This Sadly always happens with threads on here about CFS/ME. Have a bit of respect for those suffering and those who have died BECAUSE of this illness.

nicky7654 · 20/01/2020 20:54

I have had M.E for years and yes it is frustrating when you are not believed. Your BF will probably never change his beliefs so it's down to you to decide what you want to do for your future. .As hard as it is try to get up out of bed in the morning and do gentle exercise and short walks. I spent a number of years just thinking about sleep but keeping to a routine does help. Your body hurts I know but staying in bed all day isn't good. I wish you well xx

oblada · 20/01/2020 20:57

Well you definitely need to have a supportive partner.
However his views that illnesses have psychological roots are not necessarily to be discounted. We do not understand illnesses well enough to discount a potentially very deep mind/body connection. I believe there is mileage in trusting that the mind can cure the body, at least in part, and that is for all illnesses. However this is very different to saying that illnesses are not real or are fake or made up, but to recognise that we are more powerful than we think. It's certainly not a bad outlook to try to have. Again it is not to say that ppl choose to be ill, just to recognise there is more to be looking into than modern medicine.

But the bottom line is that he should support you and you need to discuss it together and be sure you want to be in this together.

spongejack · 20/01/2020 20:58

The relationship will not work, just finish it now!

nicky7654 · 20/01/2020 21:03

My M.E was caused by a virus where I couldn't even comb my hair my body hurt so much. I never saw a Dr as my mum never asked for one for me so I never found out what my illness was (I'm guessing glandular fever maybe) I spent about a week in bed and once up and mobile even walking up stairs in school was painful. 35 year later I tire easily but am otherwise in good health. More research is need to find a cause and cure.

ColourMagic · 20/01/2020 21:08

I believe there is mileage in trusting that the mind can cure the body, at least in part, and that is for all illnesses.

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Well, we should not worry about a disappearing NHS then. If "the mind can cure the body, at least in part" then why put such a percentage of national funding into the NHS? Economists love that argument so much that some have influenced NHS policies (Richard Layard for example), with national programs such as IAPT, and 'CBT for all' which have proved costly and ineffectual, not to mention putting huge strain on the under trained staff recruited to deliver such policies.

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Insurance companies (Permanent Health insurance, income protection in cases of disability and long term diseases) love 'mind over matter' ideology too. They can (and do) argue that the claimant's condition is fully or part 'psychological' and get out of paying the full insurance, or imposing the 24 month limit.

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How comforting it must be to believe that other people's disabling (or terminal) diseases can be cured by their own mental attitudes.

Thestrangestthing · 20/01/2020 21:13

I believe there is mileage in trusting that the mind can cure the body, at least in part, and that is for all illnesses.

🤣🤣🤣

ColourMagic · 20/01/2020 21:22

I believe there is mileage in trusting that the mind can cure the body, at least in part, and that is for all illnesses

So that would include Ebola, Typhus, Cholera, Dysentery, Bubonic Plague, and the recent Coronavirus spreading from China as examples of "all illnesses".

Interesting. .....

Perhaps you (whoever wrote that) would care to be recruited for a 'Mind over Matter' research study for any (or all) of those diseases.

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Orangeblossom78 · 20/01/2020 21:28

I understand the hostility towards psychology and ME / CFS, researchers were abused and attacked for researching in these areas, sadly. the mind and body are interlinked. And yes everyone DOES have the right to an opinion! It might not be something you would agree with, but we do all have a right. From someone who also has a disabling condition.

Orangeblossom78 · 20/01/2020 21:29

So, I am in agreement with Oblada

Orangeblossom78 · 20/01/2020 21:30

More on the abuse / attacks here. www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

wildcherries · 20/01/2020 21:33

I believe there is mileage in trusting that the mind can cure the body, at least in part, and that is for all illnesses

I'd love to get rid of my ever-worsening disability. I'll just put my mind to it, then.

Ugh! This is what we're up against. Hiding thread.

ColourMagic · 20/01/2020 21:43

I understand the hostility towards psychology and ME / CFS, researchers were abused and attacked for researching in these areas

No, researchers were not abused or attacked for researching psychology and ME/CFS.

That claim has been debunked in court, at a 1st Tier Tribunal for a Freedom of Information Case. The researchers tried to claim that they had been 'harassed' etc by sick people. But the researchers could not produce any evidence, not even sworn statements. The most the researchers could produce was a statement that one of them had been heckled, at a seminar, by an individual, once.

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The UK ME/CFS researchers who squandered £5 million pounds of public money on a low quality study, have had their study criticised by 140 plus international scientists of high status, who state the study is so flawed that it should be retracted from the medical literature. Valid criticism of bad science is not an "attack".

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'An open letter to Psychological Medicine about “recovery” and the PACE trial'

" ..... To protect patients from ineffective and possibly harmful treatments, White et al.’s recovery claims cannot stand in the literature. Therefore, we are asking Psychological Medicine to retract the paper immediately. Patients and clinicians deserve and expect accurate and unbiased information on which to base their treatment decisions. We urge you to take action without further delay."

Signed ...... '

www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/

GrolliffetheDragon · 20/01/2020 21:45

I understand the hostility towards psychology and ME / CFS, researchers were abused and attacked for researching in these areas, sadly.

While stigma surrounding mental health issues may be partly a cause of this, you have to remember that for many people the fight to get a diagnosis or to be listened to and believed at all means that any 'dismissal' (and that's how it would be seen) of ME as a psychological condition was obviously never going to go down well. Let's also not forget the young people forced into exercising leading to further deterioration of their health or in some cases thrown into swimming pools on the grounds that there was nothing wrong with them, and if given no choice they would swim.

From what I know, from personal experience and reading about it, ME is not a psychological condition, though, funnily enough, having a chronic condition that rips most of what is fun or interesting about life away from you, destroys friendships and leaves you in pain while nobody really understands what is going on is not good for your mental health.

And as actually getting a diagnosis is so difficult, I spent a couple years fighting it. Pushing myself to do the things I'd been able to do previously. Made myself a lot worse.

Allergictoironing · 20/01/2020 21:45

Hmm, mind curing the body? Wish it could cure my facet joint arthritis, or reconnect the damaged nerves in my foot, or remove the cyst that is pressing on my ribs that I need surgery for.

I do believe that certain actions and the way people think can affect the overall level of symptoms in some cases e.g. for some people topping up on particular vitamins may help with their CFS, and I know from personal experience that depression can exacerbate physical symptoms especially things like tiredness. However I don't believe these are cures or causes as such, just things that affect the impact of symptoms.

squaresandsquares · 20/01/2020 21:47

He is using her energy. She is on here telling us how crap he is.
You should be saving your energy.
Awful situation. I hope u manage to sort it out

Cath2907 · 20/01/2020 21:54

I have had CFS (was ME when originally diagnosed) since I was 16 (now 42). At times I appear “normal” and I hold down a full time job (albeit working from home), am a single parent and a dog owner. When the CFS plays up I can feel it coming. One minute I’m planning a Sunday 10 mile hike and the next I’m working out how to get through the day. I feel EXHAUSTED, my joints ache (and I wear a variety of supports), the moment I sit I fall asleep. I don’t drive when I’m ill. We eat microwave meals (normally I cook from scratch), I do the absolute bare minimum of housework and laundry. My family live up the road and they step in to support me. I sleep when DD does (so 7pm - 7am), I pay a dog walker. Sometimes I have to take time off work and sleep during the day. Basically my life is pain and tiredness and desperately just trying to get to bedtime. This lasts a few weeks or months and as quickly as it came it leaves and I spend a week returning to normal fitness.

I’m tired at the moment so it will be a week of early nights to hope to stave off another attack.

An unsympathetic partner wouldn’t be an option for me. I HATE HATE HATE being ill. I am not depressed, I am sick. If a positive mental attitude, good diet, moderate exercise etc could fix this shit I’d be healthy as a horse.

OP this may be a lifelong battle, do you really want someone with you who thinks it’s all in your head?

ColourMagic · 20/01/2020 22:00

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The Freedom of Information 1st Tier Judges, on the supposed "attacks" on certain ME/CFS researchers, found no evidence of harassment or "attacks"

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. The orchestrator of the numerous wildly lurid newspaper reports on supposed 'harassment' of ME/CFS researchers (Fiona Fox of the Science Media Centre) was found out ...... admitting in emails obtained from the Medical research Council, that the so called 'harassment' was merely lawful Freedom of Information requests, lawful House of Lords debates, and lawful GMC complaints.

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'Major breakthrough on PACE trial'

'..Queen Mary University of London (QMUL) appears to have attempted to use the prejudices which surround ME/CFS and patients' concerns about some researchers' work to justify their refusal to release data from the PACE trial.[1]

If the PACE trial's critics could be portrayed as unreasonable, obsessive and dangerous, then there would be greater concern about releasing information to them, and even just their requests for information could be considered vexatious. However, neither the Information Commissioner nor the Tribunal were persuaded.

A summary of the Information Commissioner's submission argued that: "Professor Anderson's 'wild speculations' about the possibility of 'young men, borderline sociopathic or psychopathic' attaching themselves to the PACE trial criticism 'do him no credit'. Nor do his extrapolations from benign Twitter requests for information to an 'organised campaign' from an 'adversarial group' show that he has maintained the necessary objectivity and accuracy that he is required to maintain."[1]

The Tribunal's majority verdict went on to conclude that: "It was clear that [Anderson's] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder." Of Chalder's testimony, the Information Commissioner reported that "she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants.'

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'Partly as a result of a prolonged media campaign, those ME/CFS patients who are concerned about the behaviour and quality of work of some of those researching their condition have faced a routinely stigmatising portrayal within the UK media.[2,10,13-26]

Minutes from a 2013 meeting held at the Science Media Centre, an organisation that played an important role in promoting misleading claims about the PACE trial to the UK media, show these CFS researchers deciding that "harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests]".[13,16, 27-31]

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The other two examples of harassment provided were "complaints" and "House of Lords debates".[13] It is questionable whether such acts should be considered forms of harassment. One of the agreed action points from this meeting was to "collect evidence about the impact of harassment e.g. dealing with requests eats into research time. Feed into debate about misuse of the FOI Act".

The government recently declined to exempt university researchers from the Freedom of Information Act in the way that PACE trial researchers had campaigned for, and it seems that the evidence of harassment collected was not sufficient for the Tribunal either.'

www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

informationrights.decisions.tribunals.gov.ukDBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

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