Why do doctors treat me (and chronic pain patients in general) like crap?

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I regularly get people asking WHY doctors treat me like crap. Some of those are genuine questions, filled with empathy.  Others….well others are only very thinly veiled victim blaming.

“This happens to you all the time.  Reading your blog I think you are a very bad person. You must be because no one likes you.”

Well, thanks for that peta******* .  Your kindness is breath-taking.

But I get it.  I’ve had many doctors treat me like crap. In all the usual ways – they think I’m faking. They think I’m a hypochondriac.  They think I’m malingering.  They think it’s all in my head.

These are very common experiences for chronically ill people, especially women.  Women’s pain has historically been dismissed and minimized, and while more attention is being drawn to it, it still happens every day. 

So that stuff is standard.  I think pretty much everyone gets a few physicians who treat them poorly just because they don’t believe symptoms are real.  Maybe just because they’re female.

But with me there are other reasons too.

Firstly, doctors.

Doctors undertake many years of training throughout which they are led to believe they are just a little better than the rest of us.  And they are.  I could never get through medical school, not just for the academics but the sheer dedication these people need to give to medicine. They make huge sacrifices in their social lives, their family lives.  They defer other goals like travelling the world and starting families and give everything for the one goal of becoming an MD.

I respect that. I always will.

But the world has changed.    In the last ten years the internet has become available to everyone, and medical knowledge has become available everyone.

And yes, medical MIS information has become widely available.  And that must be incredibly frustrating, to spend half your life debunking “wellness” tips and stupid online cures and treatments propagated by a celebrity chef or reality TV star. 

But.

We also have access to google scholar.  To reputable medical websites and journals.  We can read the studies.  We can learn the vocabulary.  We can learn about our bodies, and our diseases.  And when we have a rare disease, or a bunch of diseases, we quite often know MORE about our own diseases and our own body than any doctor ever could.

And doctors are NOT taught to take advice from….patients.  In fact patients are the very last people a doctor will consult.

Doctors are the experts, and they were likely trained in a time when patients blindly listened to their physicians directions without question, and either followed them, or didn’t.  There was no debate, as such, it was compliance or not.

Now, patient’s question.  I question. And while I do it politely, and with the greatest respect, most doctors DO NOT like it.

If I bring in a study that backs my view or maybe a new treatment I’m asking my doctor to consider, its rare for a doctor to accept it, let alone read it.  I get that thin-lipped smile at best, or an outright pig-short of derision at worst.

Doctors just do not want to accept that a patient can read medical jargon and learn a little.

I know that “a little knowledge is a dangerous thing.”  It absolutely IS.  And I do only know a LITTLE. I do not pretend to know a lot about medicine.   Which is why I am always respectful, polite and even passive.  I do not push my ideas, merely raise them.

And I am the expert in ME.  I read about my diseases and conditions and sometimes I pick up connections that doctors do not. Because medicine is necessarily divided into body parts.  My cardiologist knows nothing about my rheumatoid arthritis.  My rheumatologist might know a little about my IBD, but my neurologist certainly does NOT.

And these people are not used to not knowing. They don’t like to be shown as having a gap in their education.  But they DO NOT have a gap, they are merely specialised in one area. Medicine and the human body is far too complicated and HUGE for it to be any other way. NO one person could know everything about the human body and treat every disease.

But doctors cannot just practice their specialty in isolation. The body is a larger organism, a system, and each body system affects the others.  And a diseased body will behave in unexpected ways.

Doctors need to communicate with other doctors, in a non-competitive way.  And that’s another area where treatment falls down. 

How many times have I been prescribed a treatment that is in direct contradiction to what one of my other doctors has prescribed?  I can’t count them.  Very often.

Do they TALK to eachother?  NOPE!  They’re doo busy.  Or something. They don’t get paid to talk about me with another doctor. That’s extra work. 

But I suffer for that.  In the end I usually have to decide for myself which doctor’s advice I will follow and which doctor I will ignore.  I’m not the best person to make that decision, my doctors should decide that in concert.  But that’s not the way medicine works.  Doctors operate in silos, where they are the kind of their little heap. Complex, chronic patients force them into the uncomfortable unknown, and communication between very busy professionals is hard to arrange.  I get that. But the patients are the ones who suffer.

And inevitably I have to go back to the doctor who’s protocol I DIDN’T follow and explain my reasoning without stepping on their ego.  Also a fragile task!

Educated patients are dedicated too. There is no greater incentive to LEARN than from wanting daily, severe pain to END.  Nothing is more motivating than the hope of a more functional, less painful life.

So I read.  I research. I learn.  Sometimes I have to trial treatments without my specialists knowledge or consent. 

My endocrinologist is old school.  She’s been trained to only use knowledge that is tried and tested and true.  The scientific method.  Efficacy and safety proven beyond a doubt.

The problem with this is that at least SOME of her knowledge is 30 years old.  She is not up to date.  And she’s not interested in changing.  She is not interested in prescribing newer protocols. And she is certainly not going to humour a PATIENT by trialling a treatment that has only a few, recent studies behind it.  She does not want to try new things. She wants to stay in her comfort zone.

And most doctors are like this.  But people with multiple, rare diseases are not ‘comfort zone’ patients.

Some, often younger doctors, are more open to change.  More flexible. More interested in newer treatments and therapies and are interested in the latest studies.  I have one doctor like that and she is gold to me.  She discusses recent studies and papers with me and treats me like an equal, she is also happy to explain the bits I don’t understand.  But she’s in a specialty where no more can be done for me.  I don’t see her, or her like, very often. 

Doctors are the experts, their training doesn’t allow them to be flexible and open minded, and the last person they want to take advice from is the PATIENT.

Next, if you look at some classic medical texts and learn about how doctors are trained, they ARE taught that patients lie. And that patients are wrong, and not to be trusted. 

Dr House is based in fact.  Some doctors are trained that patients lie.  Or are just plain wrong. Trust signs over a patient’s story.  Empirical tests are never wrong. The reference range is correct for EVERYBODY. 

Medical training teaches doctors to trust their objective assessment over a patient’s story.  And there’s good reason for that, too.  But, again, some of us are telling the whole truth and we know enough medical terminology to be accurate.  To give a good history.  And we know our own bodies, and what is and isn’t normal for us.

Weight loss is a great example.  I have eosinophilic esophagitis.  I lived mostly on purred veg and lean protein. I average about 800 calories a day.  And on this, I became obese.  20kgs overweight.  Heavier than I was when I was pregnant. I have always worked hard to keep my bodyfat down and stay lean. I exercise hard, and I eat healthy foods.  I’m aware of the calorie content of everything. I had anorexia nervosa when I was young.  You never really get past the calorie control of anorexia. And I will never be comfortable in an obese body.  It’s a psychological disease, but a defining aspect of it is self-starvation and the determination to do so.

So when I say I am eating an average of 800n carlories a day, that is the TRUTH.

The weight came on rapidly, after I started a medication that I’ve now stopped. And after my hysterectomy and all my hormones became totally messed up.

Given that I am clearly NOT overeating, there must be a metabolic problem.  These kinds of problems usually fall under the category of endocrinology.  I have hypothyroidism.  I have adrenal insufficiency.  I have had an oophorectomy (both ovaries removed) yet I still ovulate, I am NOT menopausal.   I have a pituitary tumour, most people with pituitary tumours are obese.  CLEARY there is a connection, but medical studies haven’t determined that yet, so my endocrinologist will not accept it.  And then there is my extremely high bone density.  Complicated.

Far easier to ignore everything I’m telling her and decide that I must be eating bon-bons and lying to her (and myself).

That’s her training.  But its very offensive to me, as her patient.  Not a great way to run a productive partnership – openly disbelieving me and arguing.  But she has nothing to lose, its NOT her health on the line.  Its not her body that’s broken.  She is not the one in pain.

To her, I am just a complicated patient. She has no real incentive to dig deeper and help me.  I’m just hard work.

I used to be a computer programmer. I worked in maintenance.  Maintaining old programs is frustrating work, few people enjoy doing it.  I regularly faced “impossible” bugs.  Things that appeared intermittently, that were impossible to recreate and therefore impossible to debug.  I HATED working on those applications.

I am that application to my doctor.  I am hard work. None of the testing makes sense.  She can’t align my symptoms and bloodwork with one disorder, therefore she doesn’t’ know how to treat me.  There’s too much going on and she keeps trying to break me up into little pieces, when I am one whole person.

Ultimately, I represent failure to her.  Very unsatisfying. Every time I walk in the door, she is reminded of the gaps in her knowledge what she does NOT know.  Her failure to figure out why I am sick.  In almost three years of seeing her, she has achieved almost nothing.   But she has pocked thousands of my dollars.

She doesn’t want to blame herself for that – her ego won’t allow it. Her training won’t allow it.  So, again, blame the patient. 

It is my fault for merely existing. For being complicated. For being nothing like the textbook.  For being chronically complicated.

Which leads me to another problem – different priorities. I’ll use my weight as an example again. My goal is to get back to my normal weight. The weight I spent 30 years of my life at, without much change or much trouble. 

Her goal is to get my bloodwork into the accepted reference rage.

Obviously, that’s a problem.  Because my bloodwork CAN be in the reference range, and I can still be obese. And feeling terrible. 

But her training tells her that this is not correct. Her training tells her that bloodwork is inarguable and patients are variable and unreliable.  And again, maybe sometimes that’s true.  But many, many times, it’s just not.   Her milestones for success do not translate into success for me.  They are not meaningful for me. So when she feels she has done her job well – look at that perfect bloodwork – I am still dissatisfied and still complaining.  How incredibly annoying!

So that’s the next problem.  Different metrics. She is measuring success by different metrics to my metric for success. Patents know that bloodwork often means NOTHING.  And often has no bearing on how well, or otherwise, we are feeling.  But doctors have been taught to look at objective signs. And way back when doctors thought that labwork was foolproof, they were taught that normal blood work means healthy person.   Anything else means a psychosomatic illness.

This is completely untrue. And again, younger doctors and more progressive doctors DO realise that normal bloodwork is not necessarily indicative of good health.  But most doctors will use ‘perfect labs’ as a reason to decide that you have a psychological problem, not a physiological one. 

How can we possible agree if we’re measuring different things?  Unrelated things at that.

Then there is her manner. She is unsympathetic. She doesn’t listen closely. She often asks me to repeat myself, because she didn’t listen the first time. She then argues with me about what I’ve told her.  She gives me deep sighs. She gives me the eye-roll while saying “I don’t think that’s accurate” or something similar. 

In short, she makes it clear that she doesn’t believe me.  How can she possibly help me if she doesn’t believe me?

Then there’s my personality.  I am a very quiet person. I don’t talk much, I’m much better at writing things down.  I don’t show a lot of emotion.  I smile a lot, which makes people think that I’m not in pain. I smile a lot which makes people think I’m not very bright.  I am respectful and polite.  You would think that’s a good thing, but in the real-world people think I’m weak.  Not only doctors, but friends, and family too. 

I am passive.  Over time, people realise that I don’t like conflict. I don’t fight back. I smoothe things over, I let their bad behaviour go because have enough problems in my life. I don’t need to add difficult relationships and bitchery to that list.  I make excuses for other peoples’ bad behaviour because I don’t want to deal with it.  It upsets me. I can’t cope with it. I forgive too quickly so I don’t have to face it. I don’t like to dwell. 

I am too passive, and my passiveness is a big personality flaw. I don’t stand up for myself, and the result is people think I’m weak.  People feel superior to me.  Over time, people gradually get more confident, becoming ever more domineering and until they’re outright rude and bullying. They push to see how much I will take, before I will snap back.

Not everyone is like that, I treasure the friends who don’t see my gentle nature as a weakness they can exploit to manipulate me.

I take far too much, but when I’m done, I’m done.  I am passive.  I AM weak.  But once a relationship has reached this point I walk away.  Quietly. I often apologise, again to avoid confrontation, even when I did nothing wrong. But I don’t want anything to do with that person again.   If they are capable of treating me that way purely because I am passive by nature, they are not someone I want in my life.  Whether they be friends of 30 years, family or doctors. It’s a very unpleasant personality trait.  Far worse than being ‘weak’ to me.

My doctors realise that they can bully me, because they are the superior partner in the relationship. I need them more than they need me. I need them to manage life threatening conditions and prescribe life saving medications.  SO they have the upper hand. If they choose to exploit that, its time for a new doctor.

The relationship between doctor and patient is sacrosanct.  It must be based on mutual trust and respect.  I always say that my doctor is the expert in the human body and the disease, but I am the expert in ME.  Living with multiple chronic conditions and a few rare diseases for over a decade gives me a lot of experience and a lot of knowledge. 

When I meet a doctor I treat them with respect.  I call them by their title “Dr…”.  I treat them as highly educated, intelligent people.

I deserve and demand the same respect in return. 

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