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Original poster

My partner doesn't believe my illness is real.

298 replies

coffeeoclock · 20/01/2020 16:51

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?

OP posts:
CuriousaboutSamphire · 20/01/2020 17:47

Gentle exercise, pacing, any activity is NOT recommended for all, it can do great harm for some.

Don't let anyone persuade you otherwise. I'll look for the research... unless someone has it to hand, I'm on my phone going to a craft class...

PlanDeRaccordement · 20/01/2020 17:47

Have him watch one of the documentaries about CFS. Like Unrest which is on Netflix.

Take him or rather have him take you to a local CFS support group meet up.

He needs his eyes opened. Not dumped.

Frogsborn · 20/01/2020 17:50

A very similar thing actually happened to me with my ex partner. I was originally diagnosed with CFS but then realised a few months after that I may in fact have Lyme disease (the symptoms of the two illnesses are pretty much the same, and I had a rash that I had thought was ringworm a year prior which is when the illness started). Ex partner went on Internet and said that there were loads of articles saying that Lyme disease isn't real, etc, so he didn't believe me. I would lie in bed all day and he would tell me to go out and do some exercise. I get that it's difficult to understand that level of fatigue unless you've had it yourself, but there's not understanding and there's being plain rude! We ended up arguing for about 6 months over me having an illness that 'doesn't exist' and him not even trying to understand. In the end it caused me so much stress that my condition deteriorated really rapidly and was on death's door when we broke up. Really wish I had put my health first and dumped him sooner.

Thelnebriati · 20/01/2020 17:52

He tells me to change my lifestyle and diet and that I just need a 'purpose' so I can snap out of it.

I think you are going to regret staying with him.

Showmethefood · 20/01/2020 17:55

If he doesn't support you, then he doesn't deserve you. Love is about being with someone in the bad times as well as the good. You deserve that support.

IceCreamAndCandyfloss · 20/01/2020 18:03

I think he’s getting a hard time too. He’s dating a partner that’s never worked, is unable to do things that young couples usually do etc.

It’s unlikely he’s thinking about children but a partner with no own income, in bed for a good proportion of the day day it’s not an option he likely sees happening.

It doesn’t sound like it will go the distance so he may leave even if you don’t want too.

BaolFan · 20/01/2020 18:04

I am fully independent, I just want some sympathy or support. I take care of him when he's ill! The most he's done is bring me a glass of water when I faint

Listen to me carefully: HE WON'T CHANGE.

He has made his feelings about your illness abundantly clear.

Stop expecting him to magically 'get' it. He won't. He stays with you because it suits him to have a live-in housekeeper who splits the rent and bills with him, with sex when he fancies it.

Raise your standards. Where is your self-respect? Why on earth would you stay with a man who thinks so little of you he can't even be bothered to muster up some sympathy when you are ill?

Elle7rose · 20/01/2020 18:05

I'm not sure what to suggest re. lack of understanding, but wondered if a vitamin D supplement might help if your symptoms are better in summer.

hadenoughofthisall · 20/01/2020 18:06

Honestly, get rid. I know that sounds easy but your life will be so much harder with a partner who doesn't believe you. I have ME and couldn't get through day to day without a husband who believes and supports me 100%. It's hard enough advocating for yourself when so many people dismiss the disease WITH the support of those around you, but if you're trying to access help and treatment whilst also trying to convince him of your right to do so at every turn.. nah. It's not worth it babe

Elle7rose · 20/01/2020 18:06

** 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.

catwithnohat · 20/01/2020 18:11

I'm so sorry for you. I was in your position but still at home. I was lucky in that my family was supportive (especially as at one point I could barely get out of bed). My GP was clueless but kept on writing sicknotes. In retrospect I really don't know how I would have managed had they not been so kind; at one point I was a total basketcase.

It takes such a toll on both your physical health and your mental health and any negativity makes it harder to focus on recovery. You really don't need the additional stress.

If you have to stay - stay until you're well enough to leave. And then do leave, really.

BentNeckLady · 20/01/2020 18:14

It’s sounds like hard work for both of you. What time do you go to bed?

UpfieldHatesWomen · 20/01/2020 18:15

You can and should dump him over this. I developed a very painful condition which the doctors didn't at first diagnose. I kept being fobbed off or considered a hypochondriac. I wasn't, I was in agonising pain, and what made it worse was that my partner at the time wasn't supportive - he said the doctors know what they're talking about and I should just get over it, even though he could see the pain I was in. All he cared about was how my illness affected him - that I wasn't able to do the things I usually could. He only cared about me as an accessory to his life, his needs came first. It sounds like your partner might be the same. I was diagnosed eventually with something painful but thankfully benign. I wish I'd dumped my partner a lot sooner though, as his selfishness became apparent in other parts of our relationship, and he was an abusive man. It sounds like your partner is gaslighting you for his own selfish reasons.

Oaky321 · 20/01/2020 18:18

@coffeeoclock Does he get to spend the evening with you? What time do you need to go to bed?

EerieSilence · 20/01/2020 18:20

Your illness is what will shape your life - as a fibromyalgia sufferer I know pretty much everything about how your family must be ready to cope with all those nice perks a chronic disease brings into everyday family life.
Dump him, believe me, if he does not think your illness is real, he will hurt you a lot in future.

Longwhiskers14 · 20/01/2020 18:20

I can't dump him over this!

Er, yes you can. He's being shockingly unsympathetic and the longer your illness continues, the more he's going to moan, the more stressed you'll get and the more that will affect your recovery.

TheTrollFairy · 20/01/2020 18:28

As someone who has a chronic illness, it’s incredibly important that your DPs believe that you have an illness. I have been so incredibly ill and if my DP didn’t believe me then the correct support just isn’t there.
Imagine you have children together at some point and he has the opinion that a lifestyle change can help your symptoms? How will you adequately care for a child if he refuses to help out as he doesn’t believe you?

At the moment, you are 1 year into having this illness. Imagine in 5 years when you have cancelled days out, refused to go away as you don’t want to go away paying loads of money to just sit and rest do you really think that someone who doesn’t believe you will stick around for that?

MintyMabel · 20/01/2020 18:33

I can't dump him over this!

So stay with him and put up with it.

Jeeperscreepers69 · 20/01/2020 18:33

If you dont get out of bed till 5pm how do you manage to have the best time with him? Maybe cut him loose and let him enjoy life until you get a handle on your illness.?? Just a thought..

Highonpotandused · 20/01/2020 18:39

If you have children with him he will not help you raise them.

If you get so sick that you can't do the housework he will not help you.

If he leaves you, you will have nothing.

Or, you can leave him and find someone who actually loves you and doesn't pretend you're not sick.

dayslikethese1 · 20/01/2020 18:39

Are you using up all your energy on pressing him OP? doing chores/spending time doing what he wants etc. That may be making your illness worse if you're not able to properly rest and recover.

dayslikethese1 · 20/01/2020 18:39

*pleasing him

Straycatstrut · 20/01/2020 18:46

I can't stand people who are too wrapped up in themselves to give
others sympathy when they clearly deserve it.

My ex was the same with my labyrinthitis (utter UTTER life destroying illness, invisible to everyone else).

If you have a child with this man he will be the same with them OP. I'd tell him if he's serious about a future together this is going to have to change. He needs to educate himself.

WhereYouLeftIt · 20/01/2020 18:49

Well hasn't he got the life of Reilly!

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.

You are the bestest domestic appliance he will ever have!

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." so since you are not miraculously healing yourself it's just your fault and you don't deserve sympathy or understanding.

Can you really not see what an arsehole this guy is?

He is not going to change. This will be your life FOREVER if you stay with him.

Dump, dump, dump.

DeeCeeCherry · 20/01/2020 18:57

I can't dump him over this! It's so much more complicated than that. I love him and we have the best time together it's just that he's not very understanding sometimes

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.

Love goggles are causing you to miss what's in front of you - he may like and have affection for you, but it's not love on his part if he doesn't have empathy for you. Without kindness and respect any relationship is dead in the water, no matter how lovely it may be some of the time.

I hope tho that there's a cure for your illness out there somewhere. Must be rotten for you it's a shame your partner can't see past his uninformed diagnosis

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