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?

Have you heard of melatonin, coffeeoclock? It helped my daughter to naturally go off to sleep- in her case cured the insomnia at least.. It's not a drug. Was a godsend

@Choclips Yeah I have, you have to get it prescribed in the U.K. though and my doctor wouldn't give it to me unfortunately.

I’m sorry you’re unwell OP and I hope it improves soon. The thing with ME/CFS is that nobody really knows what causes it, there’s no known effective treatment yet and sadly many people, even doctors and nurses, believe it’s all psychological or psychosomatic.

Try to see it from his point of view; you have a mystery illness that has no known cure, it could last months or it could last decades.

You say you can’t get up before 5pm without extreme dizziness (I presume you’ve had all the tests, tilt table, MRI etc). At the moment you can’t work or bring in an income, so all the pressure is on him to provide financially. Does he want kids, a family at some point? Would your illness be the breaking point?

I have 2 friends with ME. One recovered within a year, she still has to pace herself but she now works, leads a full life, has energy to work out and spend time with friends. She had a course of steroids that she thinks was the turning point, plus went on an antidepressant and had therapy (to cope with her illness not to try and ‘cure’ it) and she was prescribed various medications like pregabalin and tramadol to keep the pain under control and allow her to stay mobile.
The other friend is 3 years past diagnosis and still spends most of the day in bed. I’ve stopped visiting her as often as all she wants to talk about is her illness. I feel sorry for her but I find her draining. She’s refused therapy and most conventional medicine and has few interests outside of her illness.

OP I haven’t read the full thread so I don’t know what you’ve tried, but I do think it must be scary for your boyfriend, as well as for you. Do try and get all the medical help you can and develop hobbies and interests together. Don’t exhaust yourself cleaning, save your energy for the precious time you have to enjoy each other’s company in the evenings.
Maybe couples counselling could help you face this together. Or therapy for him, because it can be incredibly frustrating and confusing when you don’t understand why your partner can’t get out of bed.

Hi OP, I also have ME and have gone from a super active, healthy, ambitious marathon runner to someone who struggles walking down the street and is scraping by at work. I have done absolutely everything possible to try to recover, or at least manage the condition but I have no idea how I would have coped without a partner who is 100% supportive. If he had questioned the validity of my illness in any way I would have found a way to deal with this alone as I don't have the energy to justify myself to the person who should have my back and support me.
Feel free to PM me if you ever want a chat with someone who knows how utterly shit this illness is x

The other friend is 3 years past diagnosis and still spends most of the day in bed. I’ve stopped visiting her as often as all she wants to talk about is her illness. I feel sorry for her but I find her draining. She’s refused therapy and most conventional medicine and has few interests outside of her illness.

Apart from pain relief and meds for disturbed sleep there is no medical treatment for ME, a lucky few improve significantly and if it is going to happen it usually happens in the first few years of the illness, a fair few may reach a moderate level of functioning - which is still limiting - and fluctuate within that bracket, some get steadily worse and are bedridden for years. Your friend who still has to spend most of her time in bed isn’t like because of what she did or didn’t do.

She may have talked about her illness a lot when you saw her as she picked up you think she could be doing more.

Don’t exhaust yourself cleaning, save your energy for the precious time you have to enjoy each other’s company in the evenings.

That is good advice. However, I share afrikat’s view if the OP’s partner will not even except she is ill it might mean there is no future in the relationship.

*accept, not except

A lot of misinformation about MS...

@YappityYapYap "Someone with MS's nerves literally rot away depending what type they have."
NOPE, the nerves don't "literally rot away" the protective myelin sheath is damaged, so signals cannot pass through...

@TatianaLarina "MS can be tested for with MRI scans now - but before the advent of MRI there was no test."
NOPE, lumbar punctures are also used often, the presence of oligoclonal bands in the CSF suggests inflammation, if its not also present in your blood it would indicate MS.

@ColourMagic " It takes on average 8 years for an MS diagnosis from the onset of symptoms, because the physical damage in the nervous system is NOT always readily identifiable from scans." I'm not sure where you're getting that information from, but neurologists who specialise in MS can have all the tests done and diagnosis confirmed in a matter of weeks, depending on your presenting symptoms, sometimes it takes a year for the specialist to rule out any doubt, and generally a MRI with contrast highlights active relapses making the process easier to confirm.

I also have a chronic illness & my DH is lovely but it's hard to get him to understand. He rarely gets poorly & when he does one good sleep & he's well again.

Mine I can be fine all day & then in the evening it can hit. He is sympathetic when he can see me in literal, screaming through tears levels of pain, but the every day pain I live with he doesn't get because he cant "see" it. Causes some arguments over sex life as I'm either tired from being in pain all day whilst working full time, or because sex always makes the pain come bad & frankly I just dont have the energy to deal with the lack of sleep or the pain or I'm so anxious not to want to make the pain worse I cant face it.

In all other ways he is a kind hearted man, this is just one hurdle we struggle with. I know everyone is LTB but I'd want to try to talk to him & help him understand, maybe a visit with your GP?

NOPE, lumbar punctures are also used often, the presence of oligoclonal bands in the CSF suggests inflammation, if its not also present in your blood it would indicate MS.

My point was actually that, prior to MRI scans, there was no test in which you could see the lesions on the brain and spinal cord. It’s also used to track disease progression. Nor did I say it was the only test - MS is usually diagnosed by neurological exam + MRI + lumbar puncture + VEP. No one test can identify MS on its own.

When you say you can't dump him over this, you're making your illness sound like a small matter. Like it's equivalent to him leaving wet towels on the bed or something.

You have a chronic long term illness. A partner should be supportive of you in sickness and health. Sounds like he isn't.

From someone who's had this illness for a long time and got better - my feeling is that you're prioritising your relationship over you health.

First he's not supportive which is truly shit to live with, I speak from experience. Second, your schedule revolves around him - in order to spend time with him in the evenings you crash all day.

I know precisely what CFS does to your sleep patterns and the insomnia is a bugger, but ime you cannot expect sleep rhythm to normalise without trying to reestablish those patterns yourself, to guide your body back to them.

What I would do, apart from dump the bf, is go to bed somewhere between nine and ten pm. Don't worry about not sleeping, as long as you are resting that's fine. Get up eight to nineish, but if you're asleep don't wake yourself. Once you're awake don't let yourself sleep for the rest of the day, no matter how tired you are, you can rest all day if you need to, but don't sleep, just promise yourself an early night.

There are some drugs that can help you sleep, your GP can recommend, or you can also use otc herbal tinctures if you don't want to use drugs. You need good sleep hygiene, no screens just before bed, relaxation techniques, soothing music and meditation practice are all helpful.

It sounds like you need testing for POTS as your experience first thing in the morning is quite characteristic.

Sorry you’re going through this OP. It’s a real bastard. I’ve had it for years. Acupuncture has been my saviour. Now I can work part time.

With regard to your partner. I had one of those guys too who I’d been with for six years and who knew me really well. He too thought I was at it. That I was playing on my symptoms. Not making enough effort to get well. And after months of being ill he decided that if it was something real the doctor would have done something about it by now so it’s obv in my head. Oh and since I was off all day doing nothing I could do his share of the housework as well as my own as I was at home when he was out working. And how it wasn’t fair I got sick pay from my work when he only got statutory sick pay when he was ill at his. Fucking unbelievable attitude.

I couldnt reason with him. The man I loved and thought I’d marry wouldn’t believe or respect me and effectively called me a liar. So when I felt strong enough I left him. Felt much better, had my mum on tap if I needed help. She believed me.

The Action For ME pamphlet about being newly diagnosed is quite good. It says in it that friends and family, even GPs, don’t always believe the sufferer. Perhaps you could show your know it all partner a copy of it. Might help a bit.

If we could all cure ourselves nobody would be sick and hospitals would close. Clearly the majority of us cannot. Some can though, like Louise Hay. But not the majority of us.

Isn't Louise Hay linked to the Scientologists?

They have some ideas about medicine and healing which are, to put it politely, mistaken, and which seem to have thrown out some quite insidious runners into popular culture and the health and beauty industry. Ideas about 'fighting' illnesses and healing oneself with positive thoughts might seem harmless enough on the surface but it wasn't till I read the various exposes of Scientology that it all made a rather sinister kind of sense.

That said, the odd reflexology massage doesn't hurt if you feel up to it.

She IS linked to Scientology, OMG, I had no idea. I do believe in the power of positive thought but she took it to a whole new level. Although I know a girl who is still alive six years after being diagnosed with stage 4 breast cancer, and she went down the natural route after chemo, so I’m sure there is something in it. But not everyone knows how to save themselves. I have to get needles stuck in me! Wish I could sort myself out! Save me a fortune!

@TatianaLarina "MS is usually diagnosed by neurological exam + MRI + lumbar puncture + VEP. No one test can identify MS on its own."

Again this information is false... MS can be and has been diagnosed WITH patient history, neurological examinations and MRI alone... Stop spreading misinformation please...

@Retroflex

This 'No one test can identify MS on its own' is correct. It's what every neuro over the years has told me (I have MS).
Lumbar puncture - Looking for bands, MRI - Looking for lesions, and many more tests. They out all the results together and then come up with the diagnosis.

It takes on average 8 years for an MS diagnosis from the onset of symptoms, because the physical damage in the nervous system is NOT always readily identifiable from scans.

This is the biggest load of rubbish I've read in a while. I was diagnosed within 6 weeks after I had ON. All the tests one after the other.

Again this information is false... MS can be and has been diagnosed WITH patient history, neurological examinations and MRI alone... Stop spreading misinformation please.

Ironically I’m not the one spreading misinformation. I did not say that to be diagnosed with MS you must have all those tests, simply listed the key tests for MS diagnosis and noted that no one test alone will diagnose it.

@UmmWhat "This 'No one test can identify MS on its own' is correct. It's what every neuro over the years has told me (I have MS)... Lumbar puncture - Looking for bands, MRI - Looking for lesions, and many more tests."

NO, this might be what happened in your case, but it's not necessarily the same for everyone who has MS.

I have (severe) MS, diagnosed with patient history, blood tests (to rule out other possible illnesses) and MRI results, by a team of neurologists who specialise in MS. A lumbar puncture wasn't needed, so I didn't have one.

@Retroflex
I think you are trying to say I said a lumbar puncture is always needed?
I think you need to read my post again.
I highlighted this
This 'No one test can identify MS on its own' is correct.
This is correct. It sounds like you didn't have just one test either so I'm not sure why you're saying it isn't correct.
Every neuro over the years has told me that there is no single test for MS. They collate results from many.
In my case, lumbar puncture, MRI, neuro exam. In your case history, blood tests, MRI.
I did not say it was the same for everyone.
Like I said, I think you have misread my post.

Op does your DP know anyone else with a similar condition? I think unfortunately CFS is one of those things that unless you have it, or are really familiar with it, you can’t always understand it.

You say that you tend to be asleep all day and awake in the evenings when your partner gets home so is it possible that he sees you “fit and well” and struggles to understand how you can be ill during the day and not be working?

I’m not at all doubting you but I can see why he may find it hard to comprehend unless he has been with you through the bad times as well as the good.

Shift in the sleep cycle is common in ME and I agree probably hard for people to understand. You can get melatonin on websites. I buy mine from www.biovea.com. It hasn’t dramatically changed my sleep cycle, but has helped me a bit.