Friday, October 22, 2010

Come Rant With Me


I saw this article in The Guardian a while back and have been nursing a low-level seethe ever since. And now is the time to let it off the leash.

Shall we start with the headline?

Failure to Act on Early Signs of Rheumatoid Arthritis Could Prove Fatal! And already, my heart is in my throat. I'll say this for it - it gets your attention and gets you to read the article and that, I suppose, is the goal of most headlines. The sub headline (or whatever you call it) pronounces equally breathlessly that "specialist says rheumatoid arthritis can be halted or even reversed if treated early, but symptoms often ignored." And this is the point where that twitch by my right eye starts ticking away like the tail of an irritated squirrel.

The third paragraph tells us that a study found people to be untreated for an average of six months, the delay being primarily due to people not bothering their GP with minor aches and pain. Sure, there's something to that. We all try to suck up things that don't seem huge, maybe waiting until the next time we go to see the doctor for a sore throat or the annual physical to mention them. And why? A big part of the reason is that telling use of words in the paragraph above, mentioning people thinking the symptoms "too minor to trouble a GP with." Aside from the heinous act of ending a sentence with a preposition, this speaks volumes. I hear this again and again on MyRACentral. People don't want to "bother the doctor" or "interrupt the doctor’s busy day for some silly pain" and who teaches them that?

We live in a culture that values stoicism, but how many of us have gone to the doctor for something hard to define and been treated like a hypochondriac? And this, my dear journalist, especially happens to people who are developing conditions that present with confusing, sporadic symptoms at first, like RA. I cannot tell you how many times I’ve heard people talk about what a relief it is to finally get a diagnosis after months - or even years - of doctors telling them it's all in their head. Or their mother's - mine was dismissed and even sent to a psychiatrist for 5 years before I got a diagnosis and not much has changed in the past 4 decades.

However, according to the article, none of this is the fault of the doctors. Because doctors are apparently able to diagnose early RA with an accuracy rate exceeding 100%. If so, I don't know what they're teaching them in the UK, but they should come over here and give workshops. Because did I mention the thing about how early RA tends to be dismissed for months or even years? And I'm not even going to touch the description of RA as always starting in the knuckles and possibly the toe joints, because that's simply not true and forgive me, but I need to take a brief pause here to go bang my head against a wall.

Right. I'm back. And now we move on to paragraph #5, in which we learn that "[t]he condition does not just affect the joints. People with rheumatoid arthritis typically die 10 years younger from premature heart disease." And this is true - it's called the mortality gap. I apologize to anyone who didn't know that and who are currently hyperventilating into a paper bag. I did the same when I first heard about it. It’s a nice motivating factor to take really, really good care of yourself and to keep getting aggressive about treatment - the Biologics in particular have been shown to have an effect on the mortality gap (reg. req.). That particular sidetrack felt important to mention, but let me return to my rant. Because this particular detail of life with RA is mentioned in one paragraph and the other eight paragraphs are about something else entirely, but naturally they have chosen to use the terrifying factoid in the headline. It this responsible journalism? Given the tone (and title) of this post, you can probably guess that I don't think so. I get that you have to sell newspapers, I get that you have to get eyeballs to your website, I get that fear tactics might get some people to the doctor sooner, but if you're giving people a heart attack with your article, they'll never benefit from the information in it.

And perhaps I'm a complete milquetoast, showing my namby pamby social worker background, but I think scaring the crap out of people in the name of public education - at least on the surface, we know that the true motivation is to sell the damn paper - isn't ethical. Suggesting in the sub headline that early intervention can reverse the disease when the quote in the article is "[t]here is also a suggestion that if you intervene aggressively you might in a small proportion of people actually switch off the disease." And this is also true - it's very new research and it's very exciting, but it is so completely in the early stages that it is only a suggestion. However, The Guardian skips lightly over that and goes for the sensational.

Which brings me back to the frustrating-to-the-point-of-tearing-out-your-hair emphasis on the infallibility of doctors and the idiocy of regular folks, because apparently in The Guardian's universe - heavily influenced by some medical propaganda, I suspect - every GP will be able to immediately diagnose RA based on some vague symptoms and possibly inconclusive or negative blood tests. Except in reality, that’s usually when they kick you out of their office, making you feel bad for bothering them in a terribly busy day and/or like a hypochondriac because there is absolutely nothing wrong with you (I’ve heard of this happening even in the face of developing deformities). Guess what? There is something wrong and many GPs wouldn't know RA if it hit them in the face. But we are taught that doctors are infallible and The Guardian certainly joins in on the solidifying of that stereotype and this means that many people take their doctor's word for it, go home and don't go back to the doctor, don't push, don't get a second opinion because what their gut is telling them doesn't matter. Because they will be dismissed and made to feel like a hypochondriac and by the time they finally get a diagnosis, it is too late to turn off the disease and they likely have some degree of damage, lots of pain and a significant impact on their life.

And, as you may have guessed, it makes me mad. It infuriates me that doctors do not take their patients seriously, that many GPs (and rheumatologists, as well) don't know that blood tests aren't a definitive indicator of the presence or absence of RA and it saddens me to the point of crying that when faced with uncertainty or not knowing, instead of admitting that they don't know and referring to someone who might, so many doctors dismiss their patients. This is why RA is so often not diagnosed within a reasonable time. Lack of knowledge and arrogance.


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9 comments:

AdrienneS said...

Here, have a blog entirely about crappy science/ medical reporting: http://www.badscience.net/
The author writes for the Guardian and frequently criticizes his own paper.

AlisonH said...

Picture me standing on a chair and shouting YES!!!!! SEVENTEEN YEARS, Lene, it took SEVENTEEN YEARS from the onset of my lupus to when someone actually had a diagnosis for it rather than blaming me, and the average is seven as it is. Did anyone ever take into account that I'm just not a whiner?  Besides that, I learned fast not to complain.  It came and went and various symptoms got explained away: well then, I thought it was normal to find out you were pregnant by waking up every morning feeling like you'd broken every bone in your body till you got moving and it settled down: Dr. E said you produce a hormone that loosens your joints a little when you're pregnant. Right?

I finally asked my sister if she got that and she was horrified and exclaimed NO!

Oh.

And I had a neurologist--sixteen years after the diagnosis, two years after a major hospitalization from the Crohn's that is an offshoot of the lupus, I went to him for my ongoing, well-established brainstem lupus issues diagnosed by the cardiologist and rheumatologist--and he denied everything.  He told me my lupus was all in my head and that yeah, I'd had a little irritable bowel so what. He was referring me to a shrink to fix me.

This is the neuro I'd been seeing for years. I knew he was a difficult person, but... He was expecting me to get angry. What he wasn't expecting was the only thing one could do in the face of utter, unexpected outrageousness: I laughed. And I meant it.

He groveled. D*$ straight you'd better, dude.

All I could think later, was, I make him too uncomfortable with his own mortality and he was trying to get me upset enough to leave him alone and never come back.

There are really really good doctors out there. My problem now is that my pattern is so ingrained of protecting myself by not opening up unless I know everything already (like that works) or have utter faith in the goodwill of the doctor (go Dr. R!) that it has, at times, done me harm. I got gently reamed by my cardiologist Tuesday for not going to the ER or at least calling him personally last week rather than waiting for his first opening. He's right, that was my fault. I don't want to be a bad patient. But I am one.

AlisonH said...

(Hope you don't mind the long post. It feels safer to say it here than on my own blog, which some of my doctors occasionally read.)

Jennifer said...

Thank you for a very well thought out and articulated response. More of these may help "journalists" see that they need to do a better job of reporting.

Anonymous said...

Unfortunately, it's not just for RA that they shoo you out of the office.  It's almost anything that they cannot immediately identify.

Becky (knittingyoyo) said...

Well said. I join you in your rant. I have a great rheumatologist but it took more years than I care to remember before my RA was accurately diagnosed and treated.

Lisa Emrich said...

Oh boy, that article really was kinda annoying.  The primary care doctor I had when I was first seeking help/guidance for what were early RA symptoms ran the bloodtests and said everything was "fine."  Sure my ESR was elevated but that wasn't too unusual he said.  (I'm still seronegative.)  Looking back, I went through some years of trying to self-treat with creams, NSAIDS, heating pads, ice packs, etc during that time.

I ended up switching to a new PCP in the same office who joined the practice.  She's great and listens to me and takes me seriously.  But even she didn't recognize the symptoms and cases of "bursitis" (shoulder) or "tendonitis" (elbows) as RA.  Then my neurologist said that it was Carpal Tunnel Syndrome.

Finally the hand surgeon, to whom I had been referred by my neuro, suspected that it really could be RA.  That's when I was finally sent to a rheumatologist.  Subtle deformities had already started in the fingers that were twice their normal size.

The general practitioners and primary care doctors do need more education when it comes to RA.  Recently, I even came across a doctor at an acute care facility who said, "well RA only effects the hands and feet, right?"  Argh!!

Jocelyn said...

Yup.  Yup, yup, yup.  I experienced much the same thing with post-partum depressiong - sign after sign (both physical and emotional) ignored until I was nearly suicidal.  And the same again with a ruptured disc in my spine that ended up causing nerve and muscle damage before someone figured out what was going on and provided me with concrete suggestions (prior to that, it was things like "You should probably never do yoga again", I kid you not).  And I can only imagine how much more frightening and frustrating it is when doctors ignore and outright dismiss signs and signals of a chronic disease, when the patient knows without a doubt that something is Wrong.

Trevor said...

There have been similiar articles about schizophrenia.  In the last ten years or so, there have been studies that have shown that in some people, early treatment of psychosis can 'cure' it.  That if someone gets on medication at the very early stages of it, then they can take the meds for a few years, and then be able to stop treatment and not be psychotic again.
And I have to say that the first few years of hearing about this, made me very upset with myself for not getting treated earlier.  Here's the thing - when you start getting paranoid, the last thing you want to do is tell someone that you're hearing things or seeing things or having weird thoughts, especially a doctor, who has the legal authority to have you locked up against your will.  So you let the symptoms fester.  Sometimes people eventually tell their doctor, sometimes family will insist on the person getting seen, and as with me, sometimes something very dramatic happens that makes it obvious.
So, then I feel guilty for having not reported my symptoms at the earliest opportunity.  Especially when some of those symptoms were actually viewed, initially, as being positive, like me finally asserting myself, instead of letting people walk all over me.  That seemed like a good thing at first.  Of course, it built up from being assertive to being aggressive.
But wow, for a few years, these news reports made me feel awful.  Especially when it seems to take forever before you realize that early intervention isn't a guarantee.  Far from it.  But the media likes to be dramatic.  Think of all the times we've seen reports that science is close to a cure for AIDS or a vaccine for HIV.