My partner doesn't believe my illness is real.

[coffeeoclock]

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?

Have you been tested for POTS?

.
.
"...believing ME/CFS is a condition that can be cured by attitude and effort is stigmatizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves (or get blamed) for their suffering, and for the collective of people deeply affected..."

— Hilda Bastian, Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

.
"Stigma is "an attribute that links a person to an undesirable stereotype, leading other people to reduce the bearer from a whole and usual person to a tainted, discounted one."[1]
People with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often described feeling stigmatized and discriminated against."

.
me-pedia.org/wiki/Stigma_and_discrimination

.

I think there are two separate things here. If he thinks you are faking it and is uncaring about your illness I think that's a really bad thing.

However, if the real issue is that he maintains there are psychological factors to your illness and that addressing these proactively could help, I think with ME that is a very reasonable suggestion.

ME is not comparable to a disease like cancer, in that cancer is at least reasonably well understood, comes with a raft of testable, physical causes/ development/ symptoms etc.... while psychological elements like positive thinking can contribute to survival/ a recovery from cancer, you would have to be pretty nutty to think these alone would do the job.

However, very very little is known about the physical elements of ME. This may simply be because it is not yet understood or it may be that ME is more wrapped up in the psychology/ spirit. That does NOT mean the illness or the suffering are not real. But it does mean that the key to recovery may be about psychology as much as any physical intervention.

My aunt had extremely severe ME for decades. She struck me as one of the most mentally normal, healthy people I had ever met. And I have absolutely no doubt that her illness was real. But after years, she did a lot of research into different psychological and spiritual approaches and she believes passionately that she cured herself. Over a couple of months she moved from being wheelchair bound to totally normal. She has never regressed and she now coaches others to do the same. I have no understanding of it, but however she did it, it wasn't a medical/ physical intervention.

Good luck OP.....

ME is a very complex illness and it's not surprising that people with small brains don't believe in it. Get him to watch Unrest on Netflix so he can be humbled into giving you a big apology and vow to do what he can to help you get better.

Frankly you're not going to get better unless he supports you. So rather than needing a purpose , you need to get rid of what's dragging you down and making your life more difficult.

Sorry everyone been away from my phone and there's so many replies to catch up on!

Regarding what time we go to bed- anywhere between 9/10 on a normal night sometimes past midnight if we go on a date but then I'm wiped out the whole next day.

Yes my family is really supportive which I'm very appreciative of.

@Becca19962014 I'm so sorry to hear about your friends daughter, how awful and scary.

Thank you to everyone for the kind replies.

So sorry you are feeling so bad. ME/CFS are one of those invisible illnesses which make people wonder what's the matter. It affects the brain too as sufferers talk of feeling "foggy" and unable to concentrate. It was not so long ago that doctors disagreed on whether this was an illness or not,but thankfully that is no longer the case.

You've said quite clearly that you can't end the relationship now and you have your reasons, maybe house, finance or whatever. I think it must be very hard to think of leaving and all that that entails when you have no energy and feel ill. I'm not sure if there is any medication that helps. I am though really frustrated at all these "dump him" posts.It's so easy tapping away at home and dishing out advice to a stranger. I know that's what Mumsnet is for in a sense but I think posters should be more sensitive. Only YOU know the reason you can't dump him now. Does he do shopping, cleaning, cooking and if not presumably you can't do that.

It is an illness that disappears - my sister had it for several years but she was living at home so had plenty of support and it did burn itself out. She used to go to an ME/CFS group twice a month and found it helpful, Maybe you could find one in your area. It's so awful when people like your partner don't believe in illness and I think it's quite common - they have no empathy.

However, very very little is known about the physical elements of ME

.
Actually a great deal is known about ME. I earlier posted a very long list of international research studies on ME.

Perhaps no one is interested in evidence when speculating is so much fun. But those research studies won't be reported on in UK newspapers, which are (mostly) more interested in continuing to stigmatise and smear the patients.

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

.
It would be really helpful for ME/CFS sufferers if the uninformed general public fixated on a different disease to pontificate about, advise about, pronounce on, gaslight the people who have it, and produce anecdotes of miraculous recoveries.

Though that would be disgracefully unfair to anyone with any other illness; the people who suffer from the designated disease would respond exactly the way ME/CFS sufferers do to the endless pronouncing about their disease..... and would tell the uninformed to get off the case.

Tiddles You are wrong.

What all experts agree on is that for many sufferers, ga program of gradual exercise helps.

No no no. Not all experts at all. Many people with ME have a energy system dysfunction and for them a programme of graded exercise is dangerous and leads to deterioration.

Just lying in bed after a diagnosis until 5pm suggests to me that your mood may well be contributing to your fatigue.

OP has stated that she is asleep until 5pm, not just lying in bed with a low mood.

I say this, not to be unkind, but because I have suffered from fatigue myself.

Fatigue is not chronic fatigue. Chronic fatigue is not Chronic Fatigue Syndrome. You're conflating different illnesses.

However, you are right that it doesn't have to be a life sentence and there are things OP can do to improve her quality of life and accept her new limitations. In this case, ditching the unsympathetic and unhelpful DP would be a good start.

Why can't you dump him over this?! It will only get worse!

I have CFS, Fibromyalgia, hypothyroidism and Chrones. I also have stress triggered seizures. My now ex can't see any of my illnesses, because they are invisible (he had never witnessed a seizure but he had seen the after effects of a few), so he wouldn't believe that they were anything but in my head and I could get over them with a bit of willpower - he told me I was lazy.

I fell pregnant last year and got hyperemesis (severe sickness - not morning sickness! Worse - it has had me hospitalised and nearly lost the baby a few times) and the last straw was him telling me to "man up" and stop being boring and a drama queen - that it was just morning sickness.

I kicked him out.

You should do the same. A man with zero empathy cannot learn how to empathise. No matter how many doctors appointments I took him to, articles I sent him, memes I found, conversations that turned to begging him to just show me some support, it didn't make an ounce of difference. You cannot change your boyfriend no matter how long you cling onto the hope that you might. You won't.

You can't educate pork, as my dear Grandmother would say!

I want to give you lots of sympathy, OP, because living with chronic health conditions is so hard – I have several auto-immune diseases and health issues, so I really do know how bad it can be. So-called “invisible diseases” get so little understanding from many people.

However, conditions like fibromyalgia, CFS, IBS and similar are often “diagnosed” because doctors haven’t found the root cause for that condition. There are no tests to diagnose any of them, so they give you a name for something so that you will go away and have to learn to live with it. Yes, they will prescribe you endless medication, but that’s about it.

I spent a long time fighting for better health, so frustrated at being told I had fibromyalgia and similar, and had had a lifetime of “IBS”. Well what I actually had was an underactive thyroid (Hashimoto’s), pernicious anaemia, coeliac disease, and a few more. My vitamin levels were so low – have you ever had your vitamin D checked? Your B12? Had your thyroid properly tested? (Your GP might only do the basic test, there are more comprehensive tests you can get done). Other posters have mentioned things like Lyme disease, Ehler Danlos syndrome etc.

Despite already eating well at the time, I made massive changes to my diet and lifestyle (with the help of a private nutritionist). My GP was beyond useless - they have little training on nutrition. My GP said that fibromyalgia was incurable but here I am, a walking talking miracle without fibromyalgia (it was extremely low vitamin D).

Your boyfriend needs to stop being an arse though, and be a bit more understanding.

I know this isn’t information that you asked for, but please don’t accept that there is nothing you can do.

People are sceptical about ME, CFS etc because there is no test that can prove you have it and basic biology tells you that an illness must have a cause. Something needs to be malfunctioning, missing, infected or just working beneath it's ability in order to cause an illness.

Describing symptoms and ruling other things out is what will get someone a diagnosis of CFS but there's nothing 'not working' that can be put on a piece of paper to say that is what is causing the symptoms. So some doctors do believe it's a psychological condition, a type of depression, a lack of good diet and exercise, bad sleeping patterns or a missed diagnosis of something else that wasn't tested for such as anemia, vitamin B12 and D deficiency and sometimes even lupus.

I don't know what I think of it because I'm not a doctor but I don't think anyone that is diagnosed or suspected of having it isn't suffering. I'm sure the pain, fatigue, the stomach cramps, the insomnia, the lack of appetite then the peaks in appetite are all very real to the person that is suffering. What is causing it though? If all the organs are doing their job, the blood is fine and the nervous system is in tact, what is causing it? It's most likely in the brain. Something in the brain just doesn't quite work right I would suspect and fatigue is a cycle that is hard to break once in it.

I read an article that suggested some people that go through a phase of getting very stressed, almost to the point of a mental breakdown but not quite, put strain on their nervous system and receptors in their brain and basically burn them out. Like a wire tripping then working again but not quite like it used to but no one really notices. The article suggested that this causes CFS and if they were to take a brain or spinal scan at the time of the 'tripping' they would be able to see what happens to cause the long term symptoms but usually people are not diagnosed until symptoms appear and everything looks to be working normally because the event of the 'tripping' has passed

Hi coffeeoclock

.
This is a short excerpt from a documentary on people with Severe ME and their mistreatment by psychological approaches in the UK. Its only about 4 minutes long.

.
The professionals who speak are Professor Leonard Jason of De Paul University Chicago (ME specialist and researcher), Prof Malcolm Hooper (Medicinal Chemistry) and Dr Nigel Speight, paediatrician.

.
'“Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK.

.
The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood.

Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. (See Bristol Watershed event videos)

.
A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations very similar to those shown in the film are taking place right now, both in the UK and in other countries.'

.
‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues – from parliament buildings to cinemas, universities and homes – from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014.
.

.

@IsJustMe you are basically me, just maybe a few steps ahead. I'm fighting my gp all the time for tests - they only do the basic thyroid tests, I can't seem to get b12/iron/anything else tested past a basic level either so it seems I have to go private, but this pregnancy has thrown me so I am just going to wait until I've had the baby and then find the strength to take on the next step of my battle with fibromyalgia, CFS, hypothyroidism, IBS etc...
sending you my love and admiration for getting through it and my thanks for reminding me that I can and will get there too! Just need to get back on the right path to answers I guess!

I am sorry OP you have this illness, it is a disabling condition. It’s quite common for people with this illness to have experienced friends and family not believing the loved one is sick as there is no definitive diagnostic test as yet. This is a huge added stress and if someone close to you even after showing them literature about the condition and how it affects you will not be open to learning about it as hard as it is it might be best to part.

Regarding the nature of the illness itself and some comments on here which are making incorrect statements on the illness, the US CDC now and US 2015 Institute of Medicine (now known as the National Academics of Engineering and Science) report make clear it is a physical illness and the report states:

“It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” www.ncbi.nlm.nih.gov/pubmed/25695122

Also for many years now the medical professional incorrectly advised behavioural treatments for people with ME/CFS such as CBT and graded exercise therapy. Yet these have shown to not have worked and in the case of graded exercise can make the illness worse due to the faulty energy metabolism which is being evidenced in research papers and on the 2nd day of CPET exercise testing.

As this US exercise physiologist Professor who has studied the effects of exercise in people with this illness says in this first short video 1 min 41 second in (link below) a huge paradigm shift is needed to understand how activity affects the body in this illness. The professor shares how almost in every disease exercise therapy/aerobic conditioning can be used as an adjunct therapy but it will not work in this illness and is in fact contraindicated. If people are interested the short video details further why this is the case.

voicesfromtheshadowsfilm.co.uk/dialogues-project/

Finally, patient groups have been trying for years for wiki to provide better up to date info with no success. Corrections are made but they are changed.

People are sceptical about ME, CFS etc because there is no test that can prove you have it

Actually there is a test, DD did it. It was an exercise test called a CPET taken on two consecutive days and it proved that she had an abnormal physiological repose to exertion and had deteriorated on the second day. This is a response unique to ME.

Her medical records state that her ME was caused by the Epstein Barr virus. She was 14 then and has had it for 4 years. She's not been at school in all that time and leaves the house now a couple of times a week for an hour or so. If anyone dared to tell me that it's not real or that she can get better through having a purpose, I would punch them in the face.

You need a very very strong mindset to cope with a chronic illness, either as a sufferer or a carer. It's not for the weak!

People are sceptical about ME, CFS etc because there is no test that can prove you have it and basic biology tells you that an illness must have a cause

.
That is a fallacy. There are numerous diseases for which the cause is not known. The cause of MS is not known. The causes of numerous cancers are not known.

.
There ARE a series of specialised tests which should be used to confirm the diagnosis of ME/CFS, which identify typical damage or dysfunction in the body and its systems. These tests are listed and described in the International Consensus Criteria for ME, the latest diagnostic criteria.

But these tests are NOT done in the UK, because ME/CFS medicine in the UK is in the dark ages.

ME was 'grabbed' by a group of UK psychiatrists in the early 1990s, who have had research funds directed into their own ideological pet theories.

Most of the breakthrough ME/CFS research comes from outside the UK for that reason.

.
A single definitive test for ME requires Funding. Research needs FUNDING. Up until the year 2010 the Medical Research Council had spent precisely Zero pounds on biomedical research for ME/CFS. That is a medical scandal.

.
The 2 day Cardiopulmonary exercise test finds a massive difference in response between ME/CFS sufferers and healthy controls. That test shows that effort cannot be repeated after 24 hours.

That test is not used in the UK. It can be a hazardous test though and not suitable for people who are severely sick with ME.

.
I do suggest you watch the excerpt from the documentary that I posted.

Here is the link again:

.

During the time I was writing my post and sending I see there have been some other excellent informative posts on the illness.

If all the organs are doing their job, the blood is fine and the nervous system is in tact, what is causing it? It's most likely in the brain. Something in the brain just doesn't quite work right I would suspect and fatigue is a cycle that is hard to break once in it.

The nervous system isn't intact. It's affected by ME. I also think you are conflating neurological and psychological. If there's something in the brain that doesn't quite work right, as you say, this makes it neurological. ME is classified by WHO as a neurological disease. If there's something in the mind that doesn't quite work right, this makes it psychological.

Furthermore, ME isn't a cycle of fatigue. It affects multiple systems and sufferers of ME are ill, not fatigued. If it was just fatigue, it could be resolved in the same way it is when it's part of other illnesses. Unfortunately this doesn't work for ME due to impaired energy systems.

I hope you don't feel I'm picking on you. But there's so much misinformation and conflation, it's important to unpick it when misconceptions arise.

.
Some of the world's top medical scientists are now researching ME. It really is not necessary for enthusiastic but uninformed members of the general public to continue imaginatively speculating and pronouncing on what they imagine ME/CFS is, or might be, and what to do about it.

There is more than enough misinformation out there already.

.

@WatchingFriendsOnRepeat

It took a long while to get to where I am now, but I am in a good place and manage my health relatively successfully. I resent having to pay for private blood testing and to see a nutritionist (although there is a lot of good information online), particularly as none of it is rocket science. I am still extremely vigilant with my diet, and pace myself in what I do, but it is worth it.

I hope your doctor knows that you need to increase your thyroid medication in pregnancy. HealthUnlocked is a great source of information:

healthunlocked.com/

Good luck

@IsJustMe thank you - I'll check the link out.

They've been checking my thyroid levels and apparently they are fine but I know they were only checking my basic TSH levels. The overall antenatal care has been shocking and I'm just doing everything I can to get me and baby through the next 8wks to my due date and I'll be making sure I start to make some progress with regards to finally "fixing" myself.

Xx

I'm sure the pain, fatigue, the stomach cramps, the insomnia, the lack of appetite then the peaks in appetite are all very real to the person that is suffering

.
How much more patronising could you get?

.
.
'What is ME?'

'Myalgic encephalomyelitis (ME) is a neurological and immunological disease (with an infectious component and/or etiology)
appearing in epidemic and sporadic forms. The illness typically has an acute onset of a viral or bacterial infection or
toxin/chemical exposure.

The disease strikes about one million American men, women and children and about 17 million worldwide. Most patients
are disabled and cannot work and about 25% are bedbound and cannot care for themselves.

.
The key feature of ME is a post-exertional exacerbation of symptoms including immune dysfunction and cognitive
impairment. The symptoms of ME are numerous and can include but are not limited to the following:

.
• difficulty processing information, aphasia, short term
memory loss, etc.

• significant muscle and joint pain

• headaches/migraines

• sleep dysfunction, unrefreshing sleep

• extreme muscle fatiguability, poor coordination, weakness
(including paralysis)

• sensitivity to light, sound, noise, vibrations, and impaired
depth perception

• profound immune dysfunction (reactivated viruses
and opportunistic infections)

• nausea and bloating

• urinary frequency

• sensitivities to food, medications, molds, odors or
chemicals

• orthostatic intolerance and vertigo

• air hunger, labored breathing, fatigue of chest wall
muscles

• subnormal body temperature, chills, low-grade fever, cold
extremities

• cardiovascular abnormalities including low blood volume

.
.
'Patients with ME need to be screened for infectious agents including viruses and bacteria often associated with ME that
are reactivated or opportunistic infections that develop due to an impaired immune system.

.
The International Classification of Diseases (ICD) code for ME is G93.3 under diseases of the nervous system – other disorders of the
brain.

.
Patients with ME must remain inside a safe activity window to prevent exacerbation of symptoms and deterioration of
baseline functionality.

Graded exercise or pushing to gradually increase activity is dangerous and medical professionals should encourage patients to rest as much as necessary to avoid post-exertional neuroimmune exhaustion (PENE).

.
d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1557428637/Event_handout_2019.pdf?1557428637

.

I wonder if he might struggle with the fact that he can't help you/solve the problem.

Some men (not all!) Need to feel they can fix things - if you broke an arm, he could take you to A&E, if you had abdominal pain he could get help/pain relief sorted but your illness can't be improved by anything he says/does and he may feel quite redundant in you being well.

Rather than trying to prove to him that this illness isn't in the mind, perhaps suggest ways he can get involved in supporting your symptoms such as researching local groups to discuss how things affect you/family.

I would guess he probably misses spending time with you when you're well as much as you miss enjoying company with him too.

I've been there, same illness, same lack of understanding (but from my mother). Honestly, Having this judgement in your life will only cause you stress and upset and make your illness worse. You might not feel you can dump him but I guarantee you that if you aren't seen as helping yourself, he'll either bully you to snap out of it(out of the goodness of his heart of course.. or dump you because you're either lazy or love playing the victim.

My aunt had extremely severe ME for decades. She struck me as one of the most mentally normal, healthy people I had ever met. And I have absolutely no doubt that her illness was real. But after years, she did a lot of research into different psychological and spiritual approaches and she believes passionately that she cured herself. Over a couple of months she moved from being wheelchair bound to totally normal. She has never regressed and she now coaches others to do the same. I have no understanding of it, but however she did it, it wasn't a medical/ physical intervention

But some people have ‘cured’ themselves of cancer - ie eschewed conventional cancer treatment and treated themselves.

If she managed to get herself out of a wheelchair - that is a physical intervention.