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 can’t dump him over this!

There is a difference between can’t and ‘won’t.

Listen to this first if you havent already

Then make him listen to it.

Talk together

Depending upon his response, you will know to do.

Keep us updated.

If you need any advice on benefits system, feel free to speak to me.

Regards Mina xx

@Elle7rose "Not trying to trivialise- there's thought to be a link between Multiple Sclerosis and Vitamin D too so could well be one with ME type symptoms."

The words thought to be should really have been highlighted in regards to Multiple Sclerosis (MS) as there's no known cause, or cure, and actually there is so much which isn't known.

MS is known as the snowflake disease, because no two people are the same, this is especially true in regard to vitamin b12, vitamin d etc... There is a huge number of people who have MS who are not deficit in any vitamins...

LTB
And raise your standards
Clue: a fruitcake who doesn't believe in doctors and is not supportive about your health issues is not boyfriend material

You need to work out how you can leave him.

Have you heard the "spoons" analogy. With a chronic condition like yours you start each day with a certain number of spoons. Sometimes it might be a few more because you've slept well for example, some days a few less.
But those spoons are all you have for the day (a bit like energy, resources, strength). You can lose a spoon just having a shower. You will lose several doing the cleaning, and you may well wipe yourself out going out in the evening. If you have any left over at the end of the day they may give you a better nights sleep pr help the next day. If you use them all up you will be near to collapse or will collapse.

He has no idea about any of this, and is using up all your spoons. That doesn't necessarily make him a bad person, just one with little life experience and as self-centred as lots of young people are.
But he is not there for you.
You need to get support for yourself.

Butyoudontlooksick.com

is a great website that will answer all your questions and many more. Good luck and keep us on updated

Regards Mina xx

I understand its hard when you love someone to leave them but I think you really are with the wrong man. I don't have anything like this but I do have anxiety, frequent migraines and am often just tired from work and our three lovely little ones but me and my husband are a team so he helps me and I help him. Not all relationships are perfect but it's give and take, if you can't support and care about each other there really is no point. Life is to short to be with the wrong person, please move away from him, just go if you don't want to have it out with him. If you were my daughter or friend I'd help you every step of the way to make a fresh start. I hope things get better for you x

What do you mean by 'he is using all of your spoons' molly?

Spoons just means energy.

OP is using all her energy keeping him company in the evenings and doing all the housework so he doesn't have to.

That's what Molly means.

If he can't support you when you are ill, you need seriously to consider the future of your relationship.

molly means the op is using al her available energy reserves on the useless boyfriend. Ideally op should portion her energy throughout the whole day to avoid big crashes in energy which the op is clearly not doing.

It's called "spoon theory" I believe.

But I don't really think he can be accused of using up all her energy though. He isn't exactly putting her to work in the mines. I have similar issues, and I force myself to do normal activities to keep sane.

I feel bad for you OP. CFS is horrendous; I was diagnosed with it and Fibromyalgia years ago and with the love and unconditional support of my darling husband we have managed to have our 3 beautiful babies. If it wasn't for him I would never have been able to have even 1! He has taken on so much of the workload and I'm constantly in awe of him and the sacrifices he's made for me and our family. That's the type of person you need when you are suffering. I used to hate talking to my mother when I was going through a particularly bad flare up because I knew she was so impatient with me saying I was exhausted all the time! She didn't get it and as a result I would feel stressed around her and felt pressure to be ok - that in itself added to the fatigue. OP I know you love your boyfriend but if he is not supportive and understanding of your condition frustration and resentment will build up over time. Really think about what you want from your future.

Re treatment, I found anti-depressants did great things for my energy levels and stayed on them for a couple of years. You may have to mess around with different ones for a while til you find one that suits you but it is well worth a try. Also would echo what others have said about Vit D - I am currently taking a Vit D and C supplement, high dose Omega 3 and Maca tabs for hormone regulation. Between all of them and cutting down a lot on sugar I 'm in a great place right now after the most horrendous 18 months of a flare up. Best of luck with everything x

You have my sympathy coffeeoclock. My daughter was largely housebound for two years due to this invisible illness and sad as it is to say, nobody seemed to care,only me, her mother. Nobody on my family once asked how did she feel , what was it like, could they do anything to help. It is extremely hurtful.

In hindsight, I should have made them listen with specific details and then outlined what I would have expected in terms of support. Instead, despite her having recovered, I still resent their selfishness and lack of empathy.

I would start with an educational c.f.s website. He must read the basics. Then tell him what you need him to do and that if it was the other way around you would do the same for him. You need positivity as a fundamental part of every day.

Good luck and wishing you a speedy recovery.

I can understand you don't want to lose your relationship, but had my husband not been supportive in regards to my disability, we wouldn't be together.
Your health comes first, and for someone to accuse you of being a liar, and tell you that you should be doing more than you're physically able to do, without offering any sort of emotional support? Life is too hard and too short for that crap!

Move out and move on, and count your blessings that you saw his true colours after only 3 years and not 30 years into your relationship with children involved!

I was diagnosed with M.E/C.F.S after my son was born 18 years ago. I asked the Dr not to put it on my notes.
My Ex narc husband made my life hell, he swore at me daily, called me lazy and useless for 18 years, I helped him renovate 3 properties and had 2 children, a year apart. I literally burnt myself out and all he did was physically, emotionally and psychologically not forgetting financially abuse me, and your DP sounds like he will do the same.

Last year I went through all the rigorous retesting again, so that I could get it officially in myDrs notes.

I suggest your other half looks up Dr Sarah Myhill who gives talks on YouTube and has her own website.

To quote Dr Sarah ‘ M.E is mytochondria not hypochondria ‘.

You will have a lifetime of misery and being called lazy unless he becomes more enlightened!

My own family think I am lazy, but I have been tested twice!

Good luck💐

And it's very hard for a partner when one of you is too tired or feeling ill to do anything for a long period, especially when there are no tangible symptoms. It's a really difficult situation, I've been there- no one believes there's anything actually wrong with you.

I think he's probably struggling with his cohabiting girlfriend having such a debilitating illness, which will have a significant impact on the quality of life of both of you..... if you remain a couple.

How is it managed? Will you be able to go to days out, holidays, care for children etc?

If he's not willing to support you, are you willing to spend your life like this?

You deserve better.

In your twenties, you want you be out and about, building a career, discovering the world etc. You don't want to be struggling every day to stay awake, fighting that moment when the plug is pulled, missing out, cancelling arrangements,"wasting" days, sleeping your life away etc. It is not a choice. It is the reality if living with CFS. I have seen fit and healthy, positive thinking people struck down with it. I have seen teens struck down with it. Until you experience it first hand, you cannot even begin to realise what a complete bastard it is. You do stuff when you can. That may be three hours today, next week or the weekend. It may be that you can go and do the weekly shop but need to sit in the car park and sleep it off afterwards.
Ignorance is not helpful. He needs to educate himself with the condition, remembering that for every condition, disease or injury, there is a collection of doubters for whom avocado smoothies, four hours of yoga and the juice of the eastern boolonga fruit smeared on your ass four times a day is the answer.
If he can't accept it, he needs to decide whether the relationship that may end up in "sickness and In health" , is for him.

My dh has fibro and cfs. It’s incredibly difficult some days. Our lifestyle has changed and I have to pick up the slack a lot. It can take its toll on even the strongest relationship. We have 2 dc who are fab but hard work. Dh works but doesn’t have much energy left. I also work and have a muscle myopathy. We’re both knackered constantly. That is the reality of it. But we love each other and cope. We both take up the slack when we’re able and work as a team. Unless your relationship is strong it won’t survive.

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

Interested to see on Wikipedia entry it says

People with CFS and their relatives tend to attribute their illness to physical causes (such as a virus or pollution) rather than to psychological causes.[7][53] Such attributions are associated with increased symptoms and impairment, and worse outcomes over time[7] However, according to the CDC, CFS is a biological illness, not a psychologic disorder, and those affected are neither malingering nor seeking secondary gain.[54]

en.wikipedia.org/wiki/Chronic_fatigue_syndrome

And i do believe it is 'real* btw...however there does seem to be something in what the partner is saying about how people define it and the response to it.

I have two family members with CFS/ME. One has a supportive and loving husband, the other one who sounds depressingly like your DP. Please leave. This will only get worse over time and his resentment is unlikely to get better.