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?

Reading your OP, my main concern would be him leaving you. You're both very young. I have no doubt he loves you, but it's a lot of pressure to put on someone else - and he already isn't 100% on board with the diagnosis.

Are your benefits enough to cover rent and bills if he leaves? Do you have savings? Can you go home to your family if needed? I'd be thinking about an escape/contingency plan if things do go tits up.

I have to agree with @BorneoBabe you're both very young he's not committed enough so I think you need to accept the relationship may fail. You need to look at options for this event, it'll help you at least to mentally prepare.

@EerieSilence

It wasn’t a diagnosis just “thrown at me”. I was extremely unwell, and had several hospital admissions, and also had several years of extensive testing on the NHS, and I totally trusted that what needed testing WAS tested.

One of my (many many) symptoms was the most disabling all-over body pain. All the tests showed absolutely NO reason for it. I trusted doctors when they said that all my tests were normal.

As a small example, if they test your B12, you may be one unit over the bottom of the range. Doctors will often tell you that the result is normal because you are “in range”. But you will almost certainly have a myriad of symptoms of low B12. The ranges we use in the UK are often lower than in other countries, so you would even be treated elsewhere, but you leave the GP being told that your symptoms cannot be B12-related. Try that with vitamin D, ferritin, just about everything you can think of. You will be very unwell. I was very unwell. Diagnosing me with depression was also their answer to it all. It took two years for them to realise I had pernicious anaemia (I had to beg for testing).

I was previously diagnosed with Hashimoto’s, and on medication, but my health deteriorated. I was told my thyroid blood tests were normal – but didn’t realise that the NHS rarely does a full thyroid panel, and my results were anything but “normal”. They usually only test the TSH, which is not a good marker on its own. My thyroid function was on the floor, but I was continually told it was normal. It was the same story with coeliac disease, and the other auto-immune diseases I have.

I am certainly not saying that every person diagnosed with fibromyalgia has low vitamin D, but I know many people diagnosed with fibromyalgia who have NEVER had the most basic tests. And they won’t bother their doctors about it either, because doctor knows best.

I have been in various support groups (for different health conditions), and my story is not unusual. Always always get copies of your test results, which you are legally entitled to have. And find out just whether they really are “normal”.

I am sorry that you are suffering so much, I really have been there and worn the tee shirt, and I truly hope that you can find something that helps you.

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.

He’s an idiot.

@IsJustMe - I had many tests, got my tests shown and if there was something in the lower range, it was discussed with me. I have a very good and meticulous GP who wanted to test everything, even the thyroid, arthritis, vitamins, minerals, whatever you can think of.
I was tested, prodded at, gave more blood samples than a vampire victim.
I wouldn't describe myself as a sufferer - I try to live as good as I can with my condition and many people don't even know I have it. I'm fine with that. I just dislike when people dis fibromyalgia as a diagnoses to go to for doctors when they don't know any better.

Hi @coffeeoclock as a fellow sufferer, I notice you mentioned being too exhausted to get out of bed until 5pm but feeling better in the evenings and being more active for 3-4 hours. I wonder whether that is making you boom and bust - hence being too tired to get up again the following day. Has anyone explained pacing to you? I hope you’ve been given good support and not just left to struggle on alone after diagnosis.

You mentioned that you receive benefits. Can I ask what you receive? I thought most benefits were removed once you live with a partner who works. I live alone at the moment but it’s a concern in the future in terms of my financial independence.

I second the suggestions to get your vitamin/ blood test results. I frequently become deficient in iron and vitamin D. Also low in B12, and a thyroid that went a bit wonky but seems to have settled down again. These could all be contributing towards your feelings of exhaustion and fatigue.

honestly dump him. my H has a very selective empathy gap and it really grates now we are further down the line. things get more complicated not less.

also he never catches a yawn. psychopath!

Take a multivitamin and I’ll feel all better??? Hooray, I wish I’d thought of that at some point over the last 15 years! Oh yes, tried that, didn’t fix me!

I’m a research chemist who currently works in medicines licensing. I’m pretty intelligent and clued up.

I eat a balanced and healthy diet and take a full spectrum multivitamin. I take daily gentle exercise. I sleep 10pm - 7am every night. I’m not depressed, I am not a drug user or a smoker and I have maybe 2 or 3 glasses of wine a week. I’m very routine based and my activity levels rarely fluctuate. I don’t go for late nights ever, not worth the price.

I work from home in the warm, cook, clean, look after my DD and walk the dog. Maybe 1 night per week I go to bed with DD at 8pm. I like to paint, read, walk, listen to music, bake. When ill I’m lucky if I can bare the TV but often I just sleep.

This week it’s back. My arms are back in braces, family have been called for extra childcare, dog walker is doing dog, cleaning and laundry is on hold. I will work for as long as I can going to bed at 8pm and hope this goes away before I have to call in sick and stay in bed all day. I’ve done nothing different except try to go on a couple of dates (finishing by 10pm). Looks like there will be no dating for me!

I’m talking about doctors not bothering with diet and vitamins, not patients ffs.

So enough of the sarky chat

Have you been assessed for POTS (postural orthostatic tachycardia)? Have a look at the POTS UK website.

@FagAsh my apologies, you would not believe how many people over the years have suggested it’s because:

• Vit deficiency
• Being vegetarian (I’m not)
• being pregnant (I wasn’t and am currently not, I was actually pretty well when pregnant)
• sleeping too much (I fucking wish!)
• being depressed (I’m not)
• not getting enough exercise
• getting too much exercise (this is the closest to true but sometimes just climbing the stairs is too much exercise)
• not getting enough fresh air
• allergies (not sure what they think I am allergic to)
• stress (just general “stress”)

My GP has been pretty good in suggesting the basics of healthy living. I have a pacing plan that I update and I try to avoid talking to new people about my illness to avoid wanting to kill people.

Dump. It’s not safe to be with someone that honestly believes doctors don’t help etc. If you ever needed medical attention I wouldn’t trust that he would help you. You’re still young, sorry about your diagnosis I don’t have the same but I have thyroid issues so tiredness is a big thing for me, but you can find someone better and more understanding later on. Don’t even think about having kids with someone who doesn’t like medical care, he just isn’t safe to be around in my opinion.

I'm sorry you are not getting support from your partner. You are both young and I think maybe your partner is struggling to accept that you aren't well. If it was something obvious like a broken leg or something he may be different but because it's almost like an invisible illness and is not believed by some people he is probably struggling to empathise and understand what you are going through.
I think you need to sit down with him and have a Frank discussion. I think you should give him the option to leave the relationship if he wants to, and if he wants to stay with you then he needs to step up with the support

@Aloe6 My Gp has actually never explained pacing to me- I hadn't heard of it until reading up on things myself!

The benefit is PIP (which is a disability benefit). I also have extra health problems that make me qualify for it.

My blood has been done recently and all is normal/good. I have brought some vitamin D today so I'll start taking that along with my multi vit & meds.

Sounds like my ex, apparently I could cure type one diabetes with the power of positive thinking and didn't need insulin.

He sounds like a twat.

But I bet when he’s unwell or if he gets man flu he wants fawning over

In fairness to him @coffeeoclock I now recognise your name and I thought you were diagnosed with depression and anxiety? You previously say you're often away until 2/3 am due to insomnia and that you were starting a job in December?

You've a lot going on and perhaps your boyfriend is struggling to cope, I think the strongest of relationships would.

What was the point of starting this thread?

Your partner doesn't believe in the medical professional , and thinks you are pretending to be ill and not helping yourself.

You are choosing to be with a person like this.

What exactly did you want people to say?

He is demonstrably not a very nice person, but you are choosing to be treated like shit by him, and for reason using what little energy you have defending him on an internet forum in a thread you started.

*awake not away

If you're getting PIP (which is ridiculously difficult to get with ME btw so well done!) and he doesn't believe you're ill, does he then think you're also committing benefit fraud?

So all we seem to have gained from this lengthy 11 page discussion is that a lot of posters don't believe the OP either.

Maybe stop trying to tell the OP she doesn't have CFS and that she just needs to go to bed earlier, and then get back to the issue with her DP. Unless you are all the DP?

Thank god for MN medical minds eh

@DishingOutDone if you read the OPs previous posts they're contradictory to this. That's what I was referring too, OP said she's had this diagnosis for a year, but previous posts do not indicate this. The DH in question is young and OP has a lot going on, he may well struggle and I can understand that.

@spongejack That is correct, I quit the job after one shift though as I couldn't manage it.

Also insomnia is a common side effect of CFS. I just didn't feel like posting about the CF in previous posts as it wasn't relevant.

I get that @coffeeoclock but I still think it's an awful lot for your DH to cope with. I think you need to sit down and talk and make sure you're not staying with him for the wrong reasons and that he's not staying with you for the wrong reasons.

Life can be tough, but being in the wrong relationship won't help.