Are you nervous about mentioning you have ME when you need treatment for something else?

[Da Funk]

So about 4 years ago I ended up having to go to the hospital in agony with intestinal pain of unknown cause. And so in the hospital, the question comes "do you suffer from anything else?" and the dilemma, do you mention the ME or not?

I did, and from then on in, a swear I got treated like my pain was all psychological, because they couldn't find anything immediately obvious on the x-ray (ultrasound was shut for the weekend). Granted, I probably wasn't smelling the best, after rolling round in agony with no sleep, and sweating profusely for 24 hours, and so exhausted it literally took me 5 hours to put a pair of socks on to get to the hospital.

So it turned out I had a very real, physical condition, diverticulosis and diverticulitis on top.

Recently I had to go to the hospital again. Same story.

But, do you get that when you have to go to the hospital? And are you nervous of mentioning the ME because of it? Do you?

I'm begining to think it's best to resist telling them. I also think these attitudes put as at risk, because there's an assumption there there's nothing really wrong, and it's just our next pyschological episode, that's best ignored.

 

[Zebra]

Hi, @Da Funk

In an emergent situation, I do not disclose my diagnosis of ME/CFS, due to fear of the experiences you mentioned above.

In my opinion and experience:

To an ER doctor--and even a hospitalist, should you be admitted--CFS equates with mental instability, psychosomatic illness, and therefore what you, the patient, are telling them about your symptoms or pain level is not to be believed. This can lead to delayed diagnosis and treatment and even a life threatening event.

What I do in an emergent situation is disclose the medical conditions for which I have objective medical evidence that can be easily verified if by looking at my online medical records.

So, I may say something like, "Yes, I have widespread dysautonomia of unknown etiology. It manifests as POTS, upper GI dysmotility, and difficulty with thermoregulation, such as low body temperature and inability to sweat. I am under the care of Drs X and Y at Hospital X for these conditions."

Depending on the situation, I may also say "I have a history of autoimmunity, low lymphocytes, and low C3 and C4."

I try to keep it simple. State it quite confidently, and if they want to know more, they can ask me questions.

I call it my elevator pitch! And it helps to put it together and practice it before you actually need it. I hope this is helpful to you!

I am adding P.S.: It occured to me that I should write this down for my sister in case I am ever so incapacitated that I need someone to speak for me.

 

[Rufous McKinney]

In an emergent situation, I do not disclose my diagnosis of ME/CFS, due to fear of the experiences you mentioned above.

I like that: emergent situation.....

my one visit to the ER during an acute ME event, I believe they asked no such questions. But then they could just decide I had the stomach flu, never figure out what actually wrong, as I did not have any stomach flu, I knew that.

I did't say I was there due to pain. No its stop this vomitting. And they aren't any good at stop this vomitting.

But I was treated for the first, oh two hours, as somebody who must be here for pain killers.

The doctor was fine. Its the other staff.....and it was a SUNDAY. PreCOVID..Imagine going there now, with the COVID?!!!!!!!!!!

My chart might say SEID, but what the heck is that? I think somebody somehow checks ones painkiller status. Three hours in, finally I got some morphine, which didn't do much.

 

[BrightCandle]

I am going through this now having moved house and facing a new GP I am wondering what if anything to ultimately to divulge and whether to even bother going through my symptoms, he wont of got much of anything useful from my prior GPs. On the one hand I would like to get a diagnosis and be in a position to be in clinical trials and get treatments as and when they are found out. But that only happens in a fairy land that doesn't exist, in the real world the mere mention of the words has brought upon universally throughout the entire NHS at a minimum disdain and more often active abuse and harm. So I am not inclined to talk about my symptoms with any doctors and I can't think what will change to adjust that, I already fully expect to die with my condition unacknowledged and untreated. I wish my trials of the private sector with people like Dr William Wier and others had gone better but the fact is it didn't, they simply didn't even bother to see me and I got fed up of chasing them.

The one part I didn't have issues with was getting disability thankfully, its funding my drug experiments.

So at this point I have given up with medicine completely, I am reading the papers and deepening my medical knowledge and trying things that ought to help based on what I and others come up with. I spent all of yesterday afternoon filling capsules after I bought a drug that I could only get in 10x the dose I wanted so I created my own mix and made my own capsules turning 60 doses into 600. I take my condition seriously even if others dont and by the end of this I'll likely have done enough study to have much of a biochemistry degree and a medical license. Fuck the NHS, just fuck them all and the arrogant prejudice they ride in on every damn day. You should always judge a society on how it treats its most vulnerable and the UK and the NHS is just evil.

 

[Jadzhia]

I'm not diagnosed but I wouldn't want to be, either (also in UK) as a diagnosis isn't going to give me any benefits, probably the opposite. I'll stick with my autoimmune thyroiditis diagnosis! That's problematic enough on its own without adding another layer of complexity.

 

[Revel]

100%, @Da Funk, and I had a very similar experience to yours, almost 4 years ago, after been sent to A&E by my GP with abdominal pain.

Having already had several bad hospital experiences over the years, I had decided not to divulge my ME/POTS diagnosis. However, on admission to the ward, the nurses raised the bed to an uncomfortable angle. It was causing me to feel constantly faint and so I thought it best to briefly explain this aspect of my medical history and that I needed to lie flat.

This only served to make the situation worse and the nurses went out of their way to keep the bed raised whenever I lowered it. Over the course of the day it became a ridiculous "game", until one nurse positioned it so that I was sitting bolt upright and then removed the control from my reach altogether. I had to curl up at the bottom of the bed to stop myself from passing out.

It didn't seem to bother the nurses how the other patients positioned themselves in their beds, it was only an issue with me, presumably because I had politely requested to remain lying flat and they wanted to prove their point that this wasn't necessary. But it was.

I was assigned "nil by mouth" until seen by the consultant. I wasn't hungry anyway but I went without fluids for over 24hrs. Not good for any patient, but if you're hypovolaemic, it's rough. Saline IV would have been appropriate care, but it wasn't forthcoming.

The consultant was extremely rude and dismissive, only towards me, and his interactions with the other patients on the ward were noticeably far more cordial. Following the briefest of examinations, he declared that I probably had "tummy ache" due to constipation (which I didn't have) and ordered my immediate discharge, still in acute pain. Weeks of agony later, it transpired that I had an occult Spigelian hernia and needed urgent surgery.

Do I believe having ME coloured the hospital staff's behaviour towards me? Absolutely. I never mention my diagnosis unless I feel the situation truly warrants it and, even then, usually regret doing so.

Unfortunately, I have found that hiding the ME and simply informing staff you have POTS affords a similar experience on the NHS as they have little to no idea how to care for a POTS patient either.

 

[Rufous McKinney]

I really feel for the ordeal ya'll get subjected to there in the GB.

Its not like that here, yet is also mostly the same.

I still can't get over the eye doctor dismissed me without issue. So thats a SINGLE organ completely dysfunctioning in my case and I'm receiving no help nothing nada.

I know its my problem to keep working the system to find the One Who Gets It. Nothing is invented here. These are serious issues.

Its like they win, you get the illness that precludes your ability to save yourself. I mean, congratulations if you can read the science and figure things out.

Hurry up, because the day may come figuring something out is getting really alot harder.

 

[YippeeKi YOW !!]

I'm begining to think it's best to resist telling them. I also think these attitudes put as at risk, because there's an assumption there there's nothing really wrong, and it's just our next pyschological episode, that's best ignored.

In an emergent situation, I do not disclose my diagnosis of ME/CFS, due to fear of the experiences you mentioned above.

I absolutely agree with @Zebra, and it puts all of us in a tenuous and even potentially dangerous situation. Do we let Drs fuddle around without full information on our medical conditions and history, or do we reveal that and expose ourselves to further depredations from the medical community. It's a razor's edge decision that carries with it possibly severe repercussions, regardless of which tack we take ...

I think @Zebra's approach is the most workable, middle-of-the-road solution ....

I may say something like, "Yes, I have widespread dysautonomia of unknown etiology. It manifests as POTS, upper GI dysmotility, and difficulty with thermoregulation, such as low body temperature and inability to sweat. I am under the care of Drs X and Y at Hospital X for these conditions."

 

[Revel]

I think @Zebra's approach is the most workable, middle-of-the-road solution ....

This might fly in the US but this advice only serves to highlight the issues we have in the UK.

Most NHS staff look blank when we mention "dysautonomia", as if we have made the word up. They also have rarely heard of POTS and, if they have, seem to consider it an anxiety-related disorder, causing symptoms to not be taken seriously.

As for being under the care of a doctor, very few of us see anyone at all, even for POTS. I can't remember when I last saw my POTS consultant as he dropped me when I refused to be referred to a notoriously bad chronic fatigue clinic for GET. Found out last week he retired several years ago, the position has not been filled and I have no idea how far afield I would have to travel now for care. A local friend also has ME/POTS and is in the same boat as myself, devoid of a doctor to oversee and monitor either condition.

 

[BrightCandle]

This might fly in the US but this advice only serves to highlight the issues we have in the UK.

The situation is a lot more dire in the UK. We don't get anywhere near the same options, its literally the centre of all the bullshit around ME and the NHS is still filled with people who do not believe this is a disease. There is little to no medical negligence case to be made when they inevitably injure us and since its a joined up system once one bit rejects you the rest does to leaving you with no access to any medical care at all. Medicine in the UK in comparison is like a caveman striking two rocks together. I can't just present a paper and my test results and expect anything but widespread prejudice for doing so "fucking google" they will whisper out under bated breath while they put anxiety and depression and possible pyschosis into my permanent medical record. We need a lot more caution than that. I think we are at the hide until attitudes are changed stage and I think the UK will be the last country to change when a diagnostic and/or treatment become available.

 

[Mouse girl]

i just tell them i have fibro or i say i have a neuro immune disease and tell them ME and they have no idea what that is in general.. i haven't had problems with this myself but i don't go to doctors much.

 

[vision blue]

Would the answer then be if asked to say "I get dizzy sometimes" or whatever other symtpoms you think are needed for your care (or just I haven't been feeling that well) but w/o putting any lable like cfs, dys, pots, fibro .

say nothing that allows them to stuff you into a bin (once youre in the bin, and in this case the loony bin, its all over in any western med system). theyre always looking to stuff in bins and that ends "diagnosis mode" , so the least use of prior diagnoses the better?

w/o a label you can also looke youre minimizing your symptoms rather than (in their mind) exaggerating them. Also good street cred if you too refuse to acknowloege that CFS is a "real disease" : In fact, if they say, records say you have CFS - you can just shrug and say "what to they know" "that's just some label" or "i don't know if that's right" and of course avoid the word "tired" or "fatigue".

in fact, we can put the question the other way, would there be any circumstances at all (I mean in current reality, not in our cloud cuckoo land fantasy worlds) in which one would ever want to volunteer "I have CFS"? At the moment i can't think of any.

(some of these stories here piss me off so much - that they should happen - but i've ranted about that in other places

 

[Rufous McKinney]

I think @Zebra's approach is the most workable, middle-of-the-road solution ....

I do think there IS a valid approach wherein one is Fully Confident about one's state of being. that Zebra approach....

Maybe just using that term Etyology- that sounds just so Matter of Fact.

They can't shake you up. Because you don't let them. Its an internal attitude, one I wish I could muster more effectively.

- so lets pretend I visit an NHS system

1) I can't see, nearly blind due to autoimmune assault on my eyeballs. I cannot get a US eye doctor to address it, yet I can't fathom this is the case; to date, total fail.

2) I can hardly speak- listening to me speak is painful to anyone tryin to listen. The pain in my throat is so very EVIDENT.

3) Again, my eyes are 3/4 closed at all times. Is this normal? How would Graded Exercise Therapy, help them?

Its seems to be my graded exercise CAUSEd my eyes to blow up all weekend. Yup, its the cause.

Ok:

4) stomach not emptying.

whats that? is that psychosomatic? How do I psychosomatically shut down my own stomach?

How would more exercising, address the NOT EMPTYING?

idiots

 

[YippeeKi YOW !!]

@Rufous McKinney

Maybe just using that term Etyology- that sounds just so Matter of Fact.

Every one of your complaints would be dismissed with a barely hidden superior smirk as, and I use yoiur word here, " ....symptoms of illness of unknown etiology ....". This is smug Doctorese for, "Yup, another ne. All in her head. Where do they all come from?""

There are days when this kind of shite makes me angrier than others. This is one of them.

4) stomach not emptying.

whats that? is that psychosomatic? How do I psychosomatically shut down my own stomach?

That's the easiest one to dismiss as purely psychological, what with the direct connection between the brain and the gut, which is also called the Enteric Nervous System, or the Second CNS or The Second Brain....

The first thing that happens, usually, when someone is deeply upset about something is a gut reaction .... either nausea, or churning, or gerd. In sudden fear or after being badly startled, vomiting, or a sort of lurching, roller-coaster stomach. The list is long/ Your brain and your stomach are total besties.

The medical system, can respond to symptoms in hundreds of ways, even over here where we don't have a ghastly single payer medical system .... none of them involving healing or treating the patient. Just pushing a script for a benzo or a Z-drug or an anti-d (all three if your really, really, lucky) across the desk and shouting "NEXTTTTT!!!

 

[Rufous McKinney]

I'll be needing to come up with a story for the new dentist. Don t know what year I'll agree to finally show up there. I'm considering typing something up, then just hand it to him.

I'm sure my dental chart is already replete with warnings about That One.....

 

[YippeeKi YOW !!]

I'm sure my dental chart is already replete with warnings about That One.....

I know the feeling and deeply empathize ....

Maybe just the general, "What with COVID and all, I just kept putting it off ...."

I've solved it by ignoring the whole thing and hoping my teeth dont fall out ....

 

[Rufous McKinney]

I know the feeling and deeply empathize ....

Maybe just the general, "What with COVID and all, I just kept putting it off ...."

the COVID shut down resulted in my dentist retiring- dang he had another ten years at least, how dare he decide to golf instead.....

 

[YippeeKi YOW !!]

the COVID shut down resulted in my dentist retiring- dang he had another ten years at least, how dare he decide to golf instead.....

In a fair world, his golf balls all started coughing and hacking and had to be intubated ....

 

[YippeeKi YOW !!]

Would the answer then be if asked to say "I get dizzy sometimes" or whatever other symtpoms you think are needed for your care (or just I haven't been feeling that well) but w/o putting any lable like cfs, dys, pots, fibro .

That's good, too. Give your symptoms, sort of, just don't label or name 'em ...

And remember to genuflect when you leave the room .... miserable bustards ...

in fact, we can put the question the other way, would there be any circumstances at all (I mean in current reality, not in our cloud cuckoo land fantasy worlds) in which one would ever want to volunteer "I have CFS"? At the moment i can't think of any.

Even in the furthest, deepest reaches of my magical cloud-cuckoo land fantasy world ... great phrase, by-the-bye ... even in that world, I cant imagine even whispering those three little letters. Or the other two ....

(some of these stories here piss me off so much - that they should happen - but i've ranted about that in other places

Me too, and please feel free to rant about it here ... it's our only safety valve ...

 

[Rufous McKinney]

the CFS terminology does not exist for me, I won't utter it.

I just haven't had a good chance to practice not uttering it.

My husband just headed out to see our Doctor. I did some coaching. He forgot the second reason he was even going to the doctor.

Egad.