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?

Also, under 'prognosis'

A systematic review described improvement and occupational outcomes of people with CFS found that "the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%). Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome." ... "In five studies, a worsening of symptoms during the period of follow-up was reported in between 5 and 20% of patients." A good outcome was associated with less fatigue severity at baseline. Other factors were occasionally, but not consistently, related to outcome, including age at onset (5 of 16 studies), and attributing illness to a psychological cause and/or having a sense of control over symptoms (4 of 16 studies)

There’s an excellent documentary on Netflix currently that I found through the ME Facebook page. It’s called Unrest. Watch that with him and if he’s still being a jerk afterwards LTB.
Recent research shows there might be a blood test for it in the future.

I honestly think you both should split up.

Your ill and he can’t recognise it. There is no cure. This is probably going to effect you for the next 60 years.

He may not want that life and will get resentful.

There was a thread on here a couple of weeks ago basically the same but it was the boyfriend who was ill. The op loved her boyfriend but she felt the future was bleak because she never signed up to be with some one who may have a life long illness. She got a lot of support in feeling this way.

He shouldn’t call you names that’s out of order but you both need to sit down and look at what the future will bring.

Also you need to think about how you will feel being told daily that your lazy for the next sixty years!

What ever you do don’t get pregnant.

@CaptainButtock she already claims benefits, and has stated that she is not dependant on him financially...

There is an interesting book "Cure" about all of this, he might be on to something with the idea that you can do something to heal it perhaps. I mean maybe he is trying to be positive in a way. here is the book in case you are interested. I found it useful with regards my fibromyalgia.

www.amazon.co.uk/Cure-Journey-Into-Science-Mind/dp/0857868853/ref=sr_1_1?keywords=cure+book&tag=mumsnetforu03-21&qid=1579551839&sr=8-1

@Bread999 Incorrect. My CFS was caused by a virus

And how would she support herself if she dumps him? He’s the breadwinner.
Benefits?

She’s already on benefits. And tbh I’m shocked that after three years in (which is nothing) the boyfriend is being expected to financially support some one which could actually be for life.

Jeepers, some of these posts are a bit aggressive. As a well person I would find too much, never mind feeling so unwell. P.m me op if you like.

@Orangeblossom78 you do realise that "Wikipedia" can be altered by anyone and it's not a reliable source of any information don't you?

@Broken2020 I'm afraid there's absolutely no evidence for that. Which virus are you claiming caused CFS?

@Bread999 CFS has recently been proven to be detected as slight swelling on the brain - usually post-viral. Your awful post above is wholly untrue and damaging

@Retroflex and do you realise that every claim on Wikipedia is cited with a source at the bottom of the page?

@Bread999 Why are you 'afraid?!' This was told to me by Chronic Fatigue Services at Seacroft Hospital (before they moved to St James). I had a virus caused by a Tick.
Please get your facts right

He is gaslighting you

He also sounds crazy with that stuff about not trusting doctors
Like OK if he gets blood poisoning one day he wont go to the doctors !

He is not supportive, not empathetic, and I actually think is abusive to try and make someone else disbeleive their own reality

I think you'll be better off without him. Supportive friends would be better than a boyfriend trying to make you believe you are crazy and undermine the reality of your condition

@Broken2020 That sounds like an incredible scientific revelation - would love to see a source for that claim please

@Bread999 I don't think you are understanding that "Wikipedia" isn't a reliable source either

*CFS has an extremely high comorbidity with depression. The treatment for CFS is therapy and CBT. While your symptoms may be real they're often a physical manifestation of suppressed psychiatric distress.

In Japan it will express itself as 'koro' or a penis panic - the belief that the penis is retracting into the body.

In Malaysia its known as latah and people will engage in screaming /dancing / uncontrollable laughter

In Western society our culture has conditioned us to express it as fatigue and joint aches. This is why there's absolutely no biological evidence or tests available for CFS - it's not a physical problem.

Read about culture bound syndromes if your interested. Your bf is correct that diet and lifestyle change will help. Antidepressants certainly have a place too. Some more understanding from him would help but overall I don't think he's being unreasonable to suggest you start making changes to your lifestyle.*

.
.
That is utter nonsense.

Will the poster please stop speculating about a serious disabling physical disease you clearly know nothing about. Your statements and advice are fatuous, harmful, and border on gaslighting.

.
ME/CFS is a WHO classified complex physical disease, which is included in the Neurological section of the World Health Organisation International Classification of Diseases.

A Review of 9,000 research papers by the US National Academy of Medicine concluded that ME (Chronic Fatigue Syndrome) is ‘a serious, chronic, complex, systemic disease', which is characterised by an abnormal response to activity.

ME/CFS is not a 'lifestyle disease', and is not a "physical manifestation of suppressed psychiatric distress."..

There is currently no cure, and the supposed 'treatments' used in the NHS have been totally discredited. CBT has no impact on the disease development, and Graded Exercise is positively dangerous, causing relapses in the highest percentage of sufferers who have been recommended to do it. Research from outside of the UK identifies grossly impaired energy production at a cellular level. ME/CFS has nothing to do with being unfit.

Pacing yourself to keep your activities within your available energy is the safest approach.

.
Perhaps coffeeoclock's partner could do with some literature to inform him. Disbelief by others is a very common experience of people with the disease.

This is a guideline for GPs, easy enough to read. It may be a little out of date now as their is a new International Consensus Criteria for diagnosing ME/CFS.

www.investinme.org/Documents/PDFdocuments/c6a_mecfsguidelines.pdf

The Wikipedia page links into research studies for all to read, it is of interest. Things can be a mix of physical and psychological. I find stress makes things a lot worse. See the research on HPA axis etc / cortisol.

Correction - looking at my letter once again, it states my CFS was caused by the Epstein- Barr virus.

This is a (well no words really cover it) really tricky and obviously emotional situation. On one side you have a relatively new diagnosis for a chronic condition that flairs up at will. And one the other you have a partner who is in general a support when the most extreme symptoms of your condition show up, but the rest of the time thinks you should be motivating your mind to over rule physical symptoms...

Must admit I had slight flash backs reading your post because I went through similar things with my then partner in my 20s when I was in the early stages of being diagnosed with a chronic mental health condition - and all I can say is that I used to feel wrong and bad and a failure and an embarrassment when I was on sick leave long term, unable to get up and showered basically all day etc.

The weird thing is I now realise that his not understanding or at least trying not to make feel like something out of my control was somehow my fault was actually a major issue in the dynamics in our relationship.... And years later although I wanted a good income and was an equal part of the relationship and doing well; there was this strange undertone of home being the 'better more stable' person... Eventually I left because his personality type (demonstrated in those early days) and the relationship dynamics weren't healthy.

I cant tell you what to do, I can't say that your situation is similar to what I experienced.... But you need to be pragmatic long term - if your partner has listened to a GP and will not change his firm & incorrect attitudes to your condition... Will that be tolerable in 5 yes, 10yrs etc etc. I'm not saying pack your bags and leave tonight! But start taking care of your life and your welfare first (even if it's in your head), talk to your partner and challenge what he believes about your condition, find out what's behind it if you can (is he actually acting out his fear about how to take care of you by doing some strange denial thing?). If over time (set yourself a milestone e.g by Christmas ) you are still feeling pressured by your partner to miraculously be fixed by the power of self belief, essential oils or whatever he thinks.... Then start making a proper exit plan, strategic, planned and safe for your health. Stress and pushing yourself will not help your condition, so you make sure you listen to your body and do what you need.... Only you know what you can and can't do. X

@Bread999 maybe you'll believe Wikipedia isn't reliable if they say it themselves... Which they do...

Another one for leave him, your illness obviously doesn't define you, but it is something you need some understanding and support around, by him refusing to 'believe' it he is basically saying he won't do anything for you. You keep saying that his life is okay as you do stuff in the evenings, don't rely on him financially etc, but what about you?

@Orangeblossom78 Wikipedia themselves confirm that the information may be unreliable, but reading further reading from links may be, depending on the original source of course...

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.