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?

I am on the fence on this one

Dump him.

Like I said- I do all the housework, he comes back from work and it's spotless, the evenings are the best time for me where I have a good 3/4hours so often we will go out in the evening- it's not a completely depressing life for him.

Could this be why he doesn't believe you're too ill to work or to get up before 5pm?

Has he actually researched your illness and at least tried to understand it?

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

No, they don't.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/

What @WhereYouLeftIt said, with bells on.

He won’t change and it sounds like you won’t leave him, so I guess you’re going to have to put up with him. Do you have family or friends? What do they think of him?

Do you have a supportive family OP?

Umm, I can certainly see what he gets out of the relationship, a housekeeper who pays their own way, but don't see that you get anything from it except work and contempt...

Would anyone have wanted to be with a bf this ill when they themselves were this age? No travel or fun, other half in bed till 5pm, all the weight of earning and caring on your shoulders?

If that’s how he feels he should dump the OP, not be a prick about her illness and tell her she’s not doing enough to help herself and that her mind can cure her body

You realise hes calling you a liar. He doesnt believe your ill. He thinks your lying. He doesnt trust you. Can you really be with someone that thinks your a liar?

@WhereYouLeftIt

You do all the housework - he doesn't have to lift a finger. Your condition improves in summer, so he gets to holiday how he wants. You sleep enough during the day to be not so bad in the evenings, so his social life is how he wants it. And your disability benefit allows him to not be the sole income to the household.

To be fair, OP also benefits from the holidays, evenings out, and disability benefits, and he works while she does the housework.

So it's not as if either of them is in a massively advantageous position from that point of view.

You won't have a choice as he will dump you, eventually. Your illness gets on his nerves and if you worsen in time, he will get fed up of you too.

Sorry but this is 100% true.

He doesn’t want to understand your condition. So from his perspective, you sleep all day, don’t work but go out in the evenings and go on holiday.

If he doesn’t get on board with the fact you have ME, this is never going to work.

Tbf, I think life for a partner of someone with ME must be pretty miserable too.

Your partner is supposed to be supportive, a cheerleader, fighting your corner - I don’t see how your relationship can survive him not believing something so fundamental and giving you the support you need for it.

Yes you can (and should) dump him.

I have Coeliac Disease. If my DH decided it wasn't real, despite talking to my doctor, I'd dump him in a heartbeat. And we've been married over 30 years and have two grown children.

My health and well-being are worth more than staying in a marriage/relationship where I am not believed and my health is not valued.

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.

You need absolute support in this. CFS is a horrible chronic illness to deal with and you tend to be in it for the long haul. I do believe there is a partial psychological element to managing the illness but this is poles apart from thinking that it is a psychological illness in itself.

I really don't see how it is beneficial to you to stay with your DP if he doesn't absolutely have your back.

Aside from that, you mention you're better in the summer. I assume you've had the full raft of blood tests and have checked your Vitamin D level figures for yourself and supplemented with high dose Vitamin D if appropriate?

Well, some (above) may think it is psychosomatic but that is only how some people think (Bread)

I have read it can be a response to trauma or a virus, the body goes into a physical 'recovery' state...have also had fibro after sepsis for example.
Often these things are related to viruses or trauma.

It can be a difficult situation with relatives etc. Since DH and I married, both of us have been diagnosed with stuff, his is Crohns and because he 'gets on with it' he tends to think I should do everything as normal too. But it isn't the same.

Whatever your beliefs it can put a lot of stress and worry on a relationship.

Maybe a light box could help

Look for CFS support groups. You will get great support and advice from other people who have it.

This man is far too immature to understand the implications of having to care for someone with a chronic illness. He will simply drain your remaining energy and then blame you further (gas-lighting, coercive control, call it what you like).

Suggest you call it a day. You deserve better.

I have Ehlers Danlos syndrome, which was diagnosed a few years ago. Previously I was diagnosed with CFS by default, in the absence of blood works pointing to anything else. I also have orthostatic hypotension which makes me go white, faint, fall over and have dizzy spells. You should be checked for that, it is treatable for some people. Please work with your doctor to ensure another diagnosis has not been overlooked, as CFS overlaps symptoms-wise with many other conditions. There is a danger that once you have a firm diagnosis, other co-morbidities are overlooked and everything is blamed on that one condition. In my case, my painful feet and neuropathy was blamed on Ehlers-Danlos joint ache, but when I pushed for help then it turned out I have Freidberg syndrome, fractured toes, bone necrosis and arthritis. So, work with your GP and try meditation, gentle yoga and cognitive-behavioural therapy etc. As for your boyfriend...I dumped my ex for various reasons, but his attitude to my emerging diagnosis was to huff about 'yet more' medical conditions, waiting for appointments, travel times to the hospital for scans and he told his son I was 'lazy' after my orthopaedic surgeon told me I had life-changing incurable conditions in front of him! When you are not well then you need someone who is 110% supportive and understanding. If you get criticised all the time, it wears you down more than the illness. Think hard about the future of this relationship.

I think you are dependent on him (obviously!) and he is starting to resent it.If he really cared for you he would be trying to help you ,not be negative .Can you maybe move back with your family do you think? You need time and space to recover, and some kindness and sympathy as well. If you have children together it will become difficult as he will expect you to look after them and wont want to help!

I’d definitely dump him, I understand it’s hard; but he’s calling you a lie

I sympathise, but there are definitely problems with a CFS diagnosis. I was seeing a rheumatologist with suspected auto immune issues. He said, and I quote ' you definitely haven't got CFS, but that's a psychological illness anyway'.

In my case I had abnormal bloods and specific symptoms which ruled out CFS, which is just as well as he seemed to be saying it doesn't exist!

The partner isn't helpful, but I would push for further tests if I were you. On other forums I have seen many posters refusing to be fobbed off with CFS or fibromyalgia diagnoses. Good luck

Dump him.

He despises and has contempt for you.