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

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. ​

 

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.

 

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.

 

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

 

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

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.

 

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 ]

 

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.

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.

 

'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 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.

 

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.?

 

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.

 

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

 

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.

 

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.

 

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.