Massive Science article: We must reckon with our ableism if we want healthcare to work for people

[rvallee]

This is the kind of issue that makes physicians roll their eyes, which is exactly why it is important to discuss as it can't be fixed from the outside. Technically with the backdrop of Long Covid but it's a general discussion.

https://massivesci.com/articles/ableism-healthcare-long-covid-fibromyalgia/

Being dismissed by doctors isn’t a rare experience for chronically ill patients. Only a month later, I had a consultation with a pain clinic about botox for migraines, a treatment recommended to me by other migraineurs. But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for. ​

 

[petrichor]

If you read what doctors say about fibromyalgia patients online it pretty much boils down to outright hatred. And no one calls them out on it.

Ableism really feels like an understatement for it. I think it's bizarre how doctors can just openly express so much hatred and disdain for a particular group like that, and they're completely immune from any consequences or any kind of pushback.

 

[Sean]

But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.

How the eff is that even allowed?

 

[DokaGirl]

Shocking, yet not surprising that pwFM are treated this way in some instances. Sadly, all too frequently.

How far would the refusal to treat go? Even life threatening situations?

What is it that turns physicians off? Do they wrongly believe that pwFM are benefit scroungers? Are dishonest, lazy, terrible people? The undeserving sick?

If they just strictly believed pwFM have distorted beliefs about their health, then one would think the doctors would accept them as patients. But FM patients, just like ME patients have been given a bad wrap.

 

[Jonathan Edwards]

I see this from the point of view of the doctor.

'Fibromyalgia is a term used 100 times more frequently by some physicians than others. Prevalence rates vary from 8% down to 0.05%. Which basically means the term is meaningless. ME/CFS has a specific meaning and is clearly useful, even if there are arguments about how many people should be included. Like a lot of doctors I still take the view that fibromyalgia as a term doesn't get anybody anywhere.

So to say one does not treat fibromyalgia is to me fair enough. And if a patient insists that they have fibromyalgia despite my trying too explain why I don't think the term helps then I might get a bit browned off. Moreover migraine is migraine, not fibromyalgia and reading this person's account they seem to have got everything pretty much in a muddle.

The related point is that there is not treatment for fibromyalgia. If people have pain they cane offered analgesia but whenever I saw people being given special treatments for 'fibromyalgia' like weird injections or anti-depressants I got the impression things were probably being made worse rather than better.

I am not sure what ableism is meant to be here but one thing I am sure of is that patients do not have a right to expect doctors to treat 'diseases' they don't believe have any scientific basis with treatments that have not been properly tested.

 

[Hutan]

I am not sure what ableism is meant to be here but one thing I am sure of is that patients do not have a right to expect doctors to treat 'diseases' they don't believe have any scientific basis with treatments that have not been properly tested.

It's about, when the patient says, I have pain here, I am experiencing this or that, that the doctor believes that they are an accurate witness of their symptoms, until there's very good evidence otherwise. If they think the patient might be getting things wrong and they aren't actually feeling pain as often as they report, they could give them an app to record things in real time. But, it's about not rushing to assume the patient is making things up because - well, what? Because the patient's idea of a good time is sitting in a doctor's office while the doctor makes it clear that they think the patient is a hypochondriac?

And, if you do believe that the patient is accurately reporting that they have crippling body aches, then isn't it reasonable to try some pain relief? And put them in touch with a good support group for people coping with pain. And find out if their family might need some sort of support. All the usual support that GPs can provide, even if they can't fix the illness.

If you don't like the term 'fibromyalgia', it shouldn't matter to the patient, I think. But, can't it just be a convenient term for body aches that we can't identify a cause for yet? If the patient wants to call their body aches 'fibromyalgia', does it really matter, if there isn't a more helpful term? What would you use - idiopathic body aches?

I still have not found a doctor who will help me manage my fibromyalgia. I still have not found a therapist who can help me unravel the trauma caused by gaslighting and years of unmanaged pain.

It's the not being believed by the person you think might be able to help you that is devastating. Maybe there are patients who get upset that a doctor isn't going to prescribe the latest miracle cure that they've heard about or isn't going to call their illness what they want it to be called. But I think what most of us are asking for is to just be believed when we say 'This is what is happening to me. Can you please undertake some investigations to rule out what you can, and then help me work out how to deal with it?'

Most of us who have been lucky enough to have a career before becoming ill have felt that we were regarded as competent and that our opinion about all sorts of things was respected. It's awful to become a patient and suddenly be treated as someone who is not to be trusted, even when we are talking about what is happening to our own body.

 

[petrichor]

I see this from the point of view of the doctor.

'Fibromyalgia is a term used 100 times more frequently by some physicians than others. Prevalence rates vary from 8% down to 0.05%. Which basically means the term is meaningless. ME/CFS has a specific meaning and is clearly useful, even if there are arguments about how many people should be included. Like a lot of doctors I still take the view that fibromyalgia as a term doesn't get anybody anywhere.

So to say one does not treat fibromyalgia is to me fair enough. And if a patient insists that they have fibromyalgia despite my trying too explain why I don't think the term helps then I might get a bit browned off. Moreover migraine is migraine, not fibromyalgia and reading this person's account they seem to have got everything pretty much in a muddle.

The related point is that there is not treatment for fibromyalgia. If people have pain they cane offered analgesia but whenever I saw people being given special treatments for 'fibromyalgia' like weird injections or anti-depressants I got the impression things were probably being made worse rather than better.

I am not sure what ableism is meant to be here but one thing I am sure of is that patients do not have a right to expect doctors to treat 'diseases' they don't believe have any scientific basis with treatments that have not been properly tested.

This article isn't about someone not being treated for fibromyalgia, it's about someone being denied treatment for something that isn't fibromyalgia (migraines), because they have fibromyalgia.

And there unfortunately isn't a very specific definition for fibromyalgia, which means you get those significantly varying prevalence rates, and which makes it hard to argue that fibromyalgia is a specific entity. If there weren't any good reason to believe that fibromyalgia is a specific entity, there would still be some motivation for labelling people with it - it means they don't go seeing different doctors endlessly and possibly end up in the hands of some questionable practitioners with potentially harmful methods and treatments, and they get some recognition rather than being seen by people as a faker or malingerer. This is a condition that can ruin people's lives, and leaving them with no recognition or help isn't very kind to them.

There does seem to be pretty good reason to believe fibromyalgia represents a somewhat specific entity, though. It's usually triggered by something, such as physical trauma, and the combination and pattern and frequency of symptoms in fibromyalgia does a fairly good job of distinguishing it from other conditions (the score on the widespread pain index, light sensitivity, exacerbation of pain after exertion or relatively light pressure, "fibro fog"). There's also the fact that opioids don't help the pain in fibromyalgia, which isn't normal.

The diagnostic criteria for fibromyalgia seems very broad so it seems likely not everyone with fibromyalgia has the same thing, but the reasons to believe there's something going on there seem pretty good

 

[Invisible Woman]

I skimmed the article and believe there are a couple of separate, but related issues.

The first is a contested illness issue. What is fibromyalgia, how do you test for it, what do you do about it. If as a doctor you don't believe fibromyalgia exists, then do you automatically assume

a) the patient is malingering

b) the patient is ill, you don't know what's wrong but don't believe the diagnosis of fibro is meaningful or the correct one.

c) the symptoms are psychogenic

I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.

This is the kicker for me. The patient has no control over what label is slapped on medical records. The patient didn't make the label up. Now, because of that label, the patient is effectively being refused treatment.

Even hypochondriacs get sick.

 

[Peter T]

So to say one does not treat fibromyalgia is to me fair enough.

I am reading the original “But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for” as the person with fibromyalgia not being treated at all for any presenting symptoms or conditions whether they are related to the fibromyalgia or not, which is very different from not trying to treat the fibromyalgia itself because there are no evidenced treatments.

I suspect this is an exaggeration, as it is hard to imagine a doctor refusing to treat a dislocated shoulder or a major stroke, because of preexisting fibromyalgia, however historically there is evidence of certain groups getting poorer medical services because of pre existing conditions. For example for many years adults with learning disabilities struggled to access many services including such as dental care.

[sorry cross posted with @petrichor and @Invisible Woman ]

 

[Jonathan Edwards]

I am of course very well aware of the problem of not being believed.
But just as members read this article from the perspective of being the patient I read it from experience of being on the other end as well. (Yes, I too have been the unbelieved patient.)

Everything I see in this article suggests that the author has got into a mindset about what is wrong with them that makes little sense. Doctors have a duty to believe accounts of symptoms but they do not have a duty to believe interpretations.

As an example. Some years ago I was consulted by a young woman who was convinced she had ankylosing spondylitis. I had taken over a clinic that used to be run by a highly controversial colleague with a private theory about ank spond and a national following. The woman had no signs or radiographic features of ank spond and I pointed that out.

As a result I discovered that the website that rates physicians in the UK rated me zero because the only person who had logged in to it was this woman - who described my refusal to treat her 'ank spond' in very much the way this author describes a refusal to treat fibromyalgia. Her interpretation of what I said was not in fact what I said.

In other words I am totally in agreement with the grievance that PWME have about not being believed. One member here is very aware of my awareness of the problem since we have struggled together to get doctors to focus on symptoms they seem not to believe in. But there is another side to the story.

And, if you do believe that the patient is accurately reporting that they have crippling body aches, then isn't it reasonable to try some pain relief? And put them in touch with a good support group for people coping with pain.

Absolutely in terms of pain relief but in this sort of context it is highly unlikely that I would have anything to offer beyond what has already been tried by a GP. And no, I wouldn't have put someone in touch with a support group because my experience of 'support' for unexplained pain was of all sorts of mumbo jumbo including things likely to do harm. I was the black sheep of my department because I did not refer to the chronic pain clinic where people had all sorts of invasive procedures that did no good while the physicians in charge muttered on about it all being 'biopsychosocial'. One thing I have learned from being on these forums is that I was right to take that position - what sounds like bullshit and black magic is just that.

 

[Jonathan Edwards]

'I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.'

I can guarantee that is not actually what was said. Does anyone actually believe those words were used?

 

[Peter T]

I suppose it is very hard to identify the extent of this problem, because it is not something doctors would normally record. I guess you rarely see in medical notes ‘deliberately ignored reported symptoms because patient has fibromyalgia’.

The is a very real risk that doctors are being trained to do just this in the context of such as MUS diagnoses which for some includes fibromyalgia, and we do know it at least occasionally occurs that patients are put at risk of serious harm.

I regularly cite a friend in a mainland European country, who experienced severe pain when bending forward following open heart surgery. It took eighteen months of her being ‘reassured’ nothing was wrong, told to push through the pain, being referred for counselling and just being plain fobbed off, before she found a doctor willing to order the X-ray that identified the eleven inch long stainless steel surgical instrument left in her chest cavity.

 

[janice]

I’m concerned that I might be stating the b****ing obvious plus I only ranting (again) I’m afraid. So please so please simply ignore this.

From my decades of having “post Glandular Fever disease” ………aka ME/CFS etc, this sounds so depressingly familiar.

I have found that U.K. healthcare professionals simply don’t know of anything they can prescribe, suggest or do to help except suggest the usual out of date and soon to be updated NICE guidelines.

I feel that healthcare professionals start off wanting to help all patients. However through time, experience, etc things change.

In the situation of FM and ME/ CFS, I’m guessing that this stems from the lack of accurate medical education around ME/CFS and FM.

Added to that , at least in case of ME/CFS, the standard blood tests all come back within normal ranges so HCP then seem at a loss, don’t have time to investigate further or simply aren’t interested since they know /believe there are no drugs they can prescribe which will solve patients issues.?

 

[Jonathan Edwards]

The is a very real risk that doctors are being trained to do just this in the context of such as MUS diagnoses which for some includes fibromyalgia, and we do know it at least occasionally occurs that patients are put at risk of serious harm.

The irony is that 'fibromyalgia' really means, in medical language 'whingeing about pain when there is nothing really wrong, oops, I mean it's all biopsychosocial'. Unexplained pain is at least just unexplained pain. The more a doctor believe in fibromyalgia the more they don't believe it's really there.

Training doctors to believe that pain that isn't there is common is a huge problem now. But I strongly suspect that if the doctor in the story refused to treat fibromyalgia they belonged to the group that do not believe in it.

In other words I think the author has misdirected their grievance.

 

[Invisible Woman]

'I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.'

I can guarantee that is not actually what was said. Does anyone actually believe those words were used?

I agree we can't know as we weren't there.

However, unfortunately, yes I can well believe that there are some doctors who would behave like this - albeit they may be a tiny minority.

I had an extremely unpleasant experience of my own with a doctor in A&E when I presented with something else. I wasn't in a position to respond while I had abuse screamed at me because he saw I had a diagnosis of ME. I honestly think the only reason he treated me (& if he hadn't I would probably have been back within the hour via ambulance) was because there were too many witnesses not to.

Edit - removed a duplicate word

 

[Invisible Woman]

I do see how frustrating the other side of the coin must be though when the patient will not listen or engage with a doctor who is trying to help. I'm not even talking about contested illness here but simply folk who've gotten a bee in their bonnet. I have had friends who've convinced themselves they've developed symptoms of something they read about in the Sunday magazine when it's actually something much more mundane.

I think this is one of the issues with the 10 minute appointment and not being able to see the same GP twice as is the case in many practices.

This is where the value of a trusted relationship between patient and doctor could save everyone time, money and needless suffering.

 

[Hoopoe]

Patients coming up with their own interpretations about the cause of their illness is often the result of medical neglect. They're trying to take the situation into their own hands because the healthcare system came across as lacking interest or motivation to help.

One of the best ways to communicate "lack of interest or motivation" to patients is to downplay and psychologize their symptoms. Saying things such as "it's just stress", "you're fine, all your tests are normal" when the person is actually having problems with ordinary daily activities are examples of this. That person is not fine and saying these things isn't going to make things better, it's just wasting time and eroding trust that can then lead to patients trying to self-diagnose or see some quack.

The error is in assuming that a problem that isn't easily diagnosed or doesn't show up on tests cannot be serious or must be psychological.

There seems to be a fear of admitting that a person might have a serious chronic illness that is difficult to diagnose. Admitting this might be what most helps patients adjust to this situation, potentially leading to better outcomes.

 

[Sean]

It's the not being believed by the person you think might be able to help you that is devastating.

Yes.

Let's be crystal clear about this: Not being believed by somebody in a critical position of such influence and authority is not just a bit of butt hurt, we are not talking slightly bruised egos here, a bad hair day. This kind of denial can and does have extraordinarily serious adverse real-world consequences, including for sheer physical survival.

I would love to see the big brave tough just-calling-it-as-I-see-it BPSers try surviving under the conditions we do. Imagine the outraged conniptions from them. A more precious bunch of snowflakes in deep denial I have yet to see.

 

[Hutan]

'I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.'

I can guarantee that is not actually what was said. Does anyone actually believe those words were used?

I don't know.

When I came to the city I am in now, I asked someone in the local ME/CFS support group who was a good doctor. I got a recommendation and went along when I had an ear infection. I told the doctor that she had been recommended by the group, thinking she might be pleased to have been recognised as a sympathetic doctor, and she was genuinely horrified. She asked that she not be recommended anymore, she said that she was not at all able to help people with their ME/CFS and that they should not come to her. It's not the same as not wanting to treat anyone with ME/CFS for anything at all, but it is similar.

I can easily imagine doctors getting really fed up with a series of people with fibromyalgia or ME/CFS labels (with some good reason, no doubt, as frustrations on all sides can escalate) and deciding that they don't want to treat any more people with those labels. Truthfully, if I was a GP, I'd rather see patients that I could properly help; and who didn't spend their consultation time pressing handfuls of photocopied papers and spreadsheets of their symptoms onto me expecting me to read them in my free time; and who didn't have a long list of symptoms, many of which just sound pretty much like what everyone has to deal with; and who didn't ask for drugs that I have never heard of and that sound seriously dodgy; and who didn't come to me bearing all the baggage of having been traumatised by other medical professionals and therefore getting upset if I express any sort of skepticism about anything.

So, actually I can easily imagine doctors, possibly even otherwise fairly reasonable doctors, saying that they would rather not treat patients diagnosed with fibromyalgia or ME/CFS, and asking their receptionist to discourage such prospective new patients if possible.

 

[petrichor]

I assume the reasoning here was actually that since they don't know whether the migraines are actual migraines or a symptom of fibromyalgia, in which case the treatment wouldn't help, they just decided not to treat patients with fibromyalgia altogether. A real migraine usually has a specific pattern of symptoms which I assume would be distinguishable from fibromyalgia symptoms, so I doubt that's justified.

Patients with fibromyalgia seem to have a reputation amongst healthcare professionals as complaining a lot, but not actually having anything wrong with them, which means many don't seem to want to treat them or investigate them altogether, as it might be a waste, might be harmful, and might encourage their false illness beliefs. Like patients with ME/CFS, there seem to be some patients with fibromyalgia that just keep searching for new treatments and diagnoses. So some hesitancy about treating and investigating patients with fibromyalgia is justified, but because doctors just don't generally know anything about fibromyalgia (so can't assess what is and isn't related to fibromyalgia) and don't take the things the patients say seriously, that just probably results in blanket dismissal of patients with fibromyalgia.

It's a similar situation as with ME/CFS, but I get the impression it might be worse for patients with fibromyalgia.