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

[Arnie Pye]

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

I don't know about people with fibromyalgia. But people with thyroid disease who complain of not getting well on the standard (under-) treatment are referred to, directly to their faces quite often, as drug addicts and drug-seekers. Many doctors appear to be oblivious to the fact that T3 is a hormone made by the body in healthy people, and hypothyroid people or people who've had thyroidectomies have less of it than healthy people.

 

[DokaGirl]

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.

Absolutely. If a disabled person is receiving government support, and their doctor doesn't believe them, they could be seriously hooped. Lose the house, the relationship, maybe the children if there are any, and on and on it goes.

"precious bunch of snowflakes":

 

[DokaGirl]

@Peter Trewhitt

11 inch long stainless steel surgical instrument: that's terrible. And, to be repeatedly dismissed.

I hope the goof up was recorded and appropriately reported. Very sloppy and neglectful on someone's part.

In Canada there is a registry for these mistakes. Not sure if it's per Province, or nationally. Amazing the things that are left in surgical patients.

 

[DokaGirl]

Twice, in hospital settings I have not been believed about health issues unrelated to ME. It's demeaning to be treated like a fraud, not deserving of respect; in fact, just the opposite.

In the end, the issues were both treated. But not without insults and uncalled for criticisms.

 

[Mithriel]

'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?

That is probably true, though some doctors can be a bit terse.

A friend had a sudden sharp pain which sent him to A&E. He was told "It's your age" and sent on his way upset and fuming (and in pain!). Later he spoke with an orthopaedic nurse who explained that the problem was caused by tissues becoming lax as you age (?) and that it would heal itself with the usual RICE protocol, paracetamol and a bit time.

He was perfectly happy with that as his pain was acknowledged and the problem explained. It would have taken the first doctor less than a minute to say all that but he had forgotten that he is a trained doctor while patients have other skills with a different knowledge base.

Sadly, as the BPS advances I can easily see that people with MUS will have difficulties getting other problems acknowledged and treated because of the pernicious myth that doing a test or giving a treatment will just make the patient believe they are ill so the caring doctor will avoid that.

 

[DokaGirl]

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.

Yes, @strategist , totally agree.


Repeatedly hearing "I can't find anything wrong", can be devastating for a patient who has torturous symptoms with no relief. There are choices, one of them is to try and take things into our own hands. An expensive endeavour with varied outcomes. This is where the patient, hoping to be helped, and gain some belief, might earnestly press photocopied articles into the hands of physicians, as @Hutan said.

Yes, when a formerly healthy active person suddenly can't walk a few feet, can't recall simple things, is in constant unrelieved pain, can't do simple chores, can't even stand for a few minutes without feeling faint, hears that there is nothing wrong, it's the exact opposite of reassuring.


(People on both sides of the consult desk have not been served at all well by the larger medical structure where ME is concerned.)

(Researchers have found abnormalities in ME. Unfortunately to date, not consistent abnormalities. Except, as discussed on another thread, perhaps the 2 day CPET research.)

 

[rvallee]

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.

Generally it's the belief that most illness is the product of behavior and life choices, something most physicians are guilty of, for a variety of reasons that include this being part of medical training in some way.

But this is really the divide, how medicine deals only with disease, not illness, which is the intersection of disease and patient. If we don't know the disease, then the obligation is to work at it until we do. Doing nothing is simply not a conscionable choice, being insultingly disrespectful of patients for medicine's own failures is about as dishonorable as it gets.

 

[rvallee]

'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?

You're thinking of it in the sense of "even if something were found they wouldn't do anything", which rarely happens. What this means is that they won't even be looking, hence will not find anything, and feel pretty darn good about it. This is how it always goes.

It's the same thing with the issue of MS having been dismissed as psychosomatic. Someone diagnosed with it may not have been and the disease itself was not, but many with MS were not even tested, therefore easy to dismiss as psychosomatic. If they found it they would take it seriously. But they don't look for it, because of the weird tropes about the "sick role" or whatever.

 

[Peter T]

I hope the goof up was recorded and appropriately reported. Very sloppy and neglectful on someone's part.

It did end up in the courts, though my friends had not been concerned about compensation, rather sorting out what went wrong, both in surgery and in the subsequent 18 months it took to get the X-ray. Unfortunately they were never even given an apology by any of the various services involved, despite ultimately winning the case.

 

[Jonathan Edwards]

You're thinking of it in the sense of "even if something were found they wouldn't do anything", which rarely happens. What this means is that they won't even be looking, hence will not find anything, and feel pretty darn good about it. This is how it always goes.

If you want to be openly derogatory about all doctors that's fine by me but as a doctor it doesn't ring true.
Most doctors would like to do their best for people but they get fed up if people have unreasonable expectations associated with diagnoses that don't mean anything useful.

Surely the divide here is that the patient wants the disease label but the doctor just wants to try to help with illness. Doctors are quite used to not knowing what causes people to be ill and trying to help all the same. It doesn't help to have someone say their fibromyalgia is causing them migraines and all their friends have botox so they want botox. As far as the doctor is concerned the person has some sort of headache and they might be able to work out the best advice if the patient hadn't already decided what they want.

 

[Arnie Pye]

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.

And doctors compound the problem...

Doctor : Good news, Mrs X, your test results are all normal. <Doctor gives a big beaming smile.>

Patient : But I don't feel any better, what can I do. <Patient looks miserable and not at all gratified.>

Doctor : <Looks pissed off because the buggers never want to be better, and why isn't the patient pleased that their results are all normal?>

 

[DokaGirl]

@Jonathan Edwards

When I put myself in a physician' shoes as @Hutan did earlier in this thread, I get some of how it must be. To be a doctor in an enormous system where one has to abide by many rules and requirements. And how frustrating it must be when there are constraints on testing, appointment schedules, unhelpful guidelines, a system that is log-jammed, little to no training on diseases such as ME, no where to refer patients to etc., etc.

And, one doctor, one cog in a giant health care machine is just one cog.

Both sides of the consult desk are at times, not served well by the health care system.

 

[DokaGirl]

@Jonathan Edwards

I agree Fibromyalgia is over used. ME was the diagnosis given to me by a ME expert. But another health care provider, neither a ME nor FM expert said I have FM. I do not have FM.

I know of someone diagnosed as having Fibromyalgia who only had one symptom of FM - pain. They do not have Fibro.

I think Fibromyalgia is a definable condition as per the Carruthers case definition. However, it's used as a grab bag like cfs is.

Stating the obvious here: it would be so much better to have clarity on these conditions.