It’s all semantics, you say?

SSGI try not to think about my days as a medical doctor too much but sometimes I can’t help it.

That was the case today. My mind drifted back to when I was an intern at the same hospital where I trained as a student. A big third-level referral centre* with the faculties of Medicine, Nursing, Microbiology, Physiotherapy and Nutrition Science  attached to it and the off-campus Ophthalmology and Cardiovascular hospitals a stone throw away.

It was a big hospital,  and we had some of the best brains of the country working there. We managed the most complicated cases and our area of influence included several provinces. FYI, the Medical School I attended to is one of the top five in the country and it has been awarded the best Medical School for several years (including my class) based on a test all graduating doctors take on their last year of school.

Why am I telling you all this? Not to brag, that’s for sure. But it is relevant as you will see if I haven’t bored you to death and you can manage to keep reading.

During my obstetrics rotation, a patient was brought to one of the beds assigned to me. Young woman. High risk pregnancy. Bulky clinical history. The first thing that caught my eye was how huge her file was. Even by our hospital standards. The second, how beautiful she looked, in her quietness. Not your standard pretty face but with beauty that irradiated from within. I could tell it was a face that had known suffering and pain. I introduced myself, exchanged a few encouraging words with her and set to read the several tomes of her clinical records.

What I learned made me very sad.

Most of the bulk of it was from her treating psychiatrist – who happened to be a friend of mine, and who had graduated in the same class as my [no ex] husband. A very smart man in my opinion. I read pages and pages on his handwriting. Outstanding data recording techniques. Impressive clinical thinking. Everything I “needed” to know was there. A beautiful example of how clinical records should be kept.

This woman had been in physical pain most of her life. She had been lead to believe it was all in her head.

Now, don’t get me wrong.

  1. I am not saying my friend and colleague didn’t do all he was taught to do during his residency in Psychiatry. I’d say he probably did it better than most.
  2. I know that psychological pain and phantom pain can be as excruciating as “real” somatic pain. That’s not what made/makes me angry.

What made me angry was that nowhere in the records, any kind of somatic illness was discussed after all the standard tests for arthritis came back negative. That was it. If the rheumatologist says it’s not physical, then it must be all in your head.

Not even once, the differential diagnosis of fibromyalgia was considered.

Every single real symptom this young, beautiful mother-to-be was dismissed as not “real”.

Take one of her symptoms, for example. She “felt” a tingling sensation on her upper back, on each side of her spine close to her neck. A textbook fibromyalgia symptom, the kind of sensation when your leg goes numb after you’re been sitting on it for too long.

Non-psychiatrists doctors refer to it as paresthesia.  Sometimes it means nothing, just a temporary and completely reversible lack of blood around the nerve (you just fell asleep on your hand) but sometimes it means nerve damage. It’s important to know. It’s important to keep in mind when your working the night shift and that drunk person comes to the ER at 4 am because they can’t feel their arm. And then we find out  it’s a just numb arm because they fell asleep at the table in a funny position. But they forgot about it, woke up, didn’t feel their arm and panicked. But that’s good. It’s nice when we can tell people that it’s nothing to worry about. Wish we could say that more often.

But then some good medical students go on doing a residence in psychiatry. And then they re-learn that what they knew as paresthesia is really a hallucination of the tactile kind.  See what they did there?

No? Let me explain further.

Here are the definitions of the words by the MedlinePlus/Merriam-Webster Medical Dictionary © 2012 by Merriam-Webster, Incorporated. Emphasis mine.

par·es·the·sia
Variant(s): or chiefly British par·aes·the·sia \ˌpar-es-ˈthē- zh(ē-)ə\
Function: noun
A sensation of pricking, tingling, or creeping on the skin having no objective cause and usually associated with injury or irritation of a sensory nerve or nerve root.
hal·lu·ci·na·tion
Pronunciation: \hə-ˌlüs-ən-ˈā-shən\
Function: noun
A perception of something (as a visual image or a sound) with no external cause usually arising from a disorder of the nervous system (as in delirium tremens or in functional psychosis without known neurological disease) or in response to drugs (as LSD).

Two words to describe the same thing. And yet, they carry such different connotations.**

Paresthesia ==> usually associated with injury or irritation of a sensory nerve or nerve root ==> real ==> No stigma
Hallucination ==> functional psychosis without known neurological disease ==> not real ==> it’s all in your head ==> Stigma
Having an injured nerve is a very respectable illness.  Psychosis? Not so much. At least not 15 years ago and still not now in many parts of the world.

You would think that doctors working at a third-level referral centre would know better than to stick labels on a person without judiciously considering all the alternatives. This is not a matter of an obscure doctor of an obscure small town.

This is not about third-world, second-class-citizen medical care. We were the best the country had to offer. And we failed her.

We failed her because from the point she was diagnosed on, she had to second-guess every single medical problem she had.  We failed her because instead of offering the treatment she needed, we gave her endless hours on a chair, talking about the hallucinations trying to convince her that what she was feeling was not real pain. We failed her because we gave her the wrong medication. We failed her because we made her family afraid of her, dreading that moment when that psychosis was going to take a turn for the worst.

Instead of helping her, we stigmatized her.*** Once the mental illness label was there, they just wouldn’t consider other options. And that to me is unacceptable. Not to mention it was not fair to the patient.

Footnotes:

* In case you are wondering what all that third level gibberish means:

  • First Level: First contact level with a health centre (smaller health centres may be called dispensaries, health stations, health posts) Normally they don’t have beds and they focus on prevention and treatment of non life-threatening conditions.
  • First referral level: A district hospital that provides a 24-hour intramural medical care which represents a higher level of competence than the source of referral, e.g. health centre.
  • Secondary referral level: A more sophisticated hospital (may be a provincial hospital) providing multi-specialist intra- and extramural care
  • Last referral (Third) level: A most sophisticated hospital located in a national or provincial capital or other big city, typically a University Teaching Hospital, providing the highest level of medical care available in the country or a region.

Source: World Health Organization LEVELS OF HEALTH SERVICES

** I remember being shocked, irritated, ireful even when I learn this while taking Psychopathology. I asked my professors about it. This thing you call a tactile hallucination, that sounds a lot like a paresthesia to me, I said. Yes, was the answer, they’re the same thing. Why the need to give it a different name, I asked. Dumbfounded faces was the answer. What, no one thought of asking this question before, I asked. Still no logical answers. There may not be measurable nerve damage but that doesn’t mean there isn’t something wrong at the molecular level. Our inability to measure something only means we don’t have the right tools.

*** To be fair, I am sure she also had a mental illness. And I was glad that at least she was getting some help for that. Anxiety and depression very often co-exist with fibromyalgia.

© Summer Solstice Girl and A Canvas Of The Minds 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Summer Solstice Girl and A Canvas Of The Minds with appropriate and specific direction to the original content.

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18 thoughts on “It’s all semantics, you say?

  1. Quite brilliant! This essay certainly emphasizes the seriousness of stigma in the health domain. Stigma can prevent treatment for a very real ailment. You are precisely correct. Why the distinction? Is it absolutely necessary? Perhaps clinically, in respect to treatment options and outcomes. Otherwise, it seems to be enforcing a societal bias.

    Excellent perspective. More than noteworthy, indeed!

  2. This is an excellent and well written article. Having a physical ailment when nobody believes you is a real pain (see what I did there?). I’ve been there, suffered in excruciating pain until I was diagnosed with sciatica. I have now been getting treatment and have been relatively pain free. It makes me so angry that I was in pain for 5 years before anyone listened.

  3. Great post! I recognized this was a problem but wasn’t sure how much it was a problem. I’m sure that young mother to be was grateful for you treating her as a human, not a file. Some doctors forget there’s a person behind the diagnostic labels and they have the power to make their patient’s life better or screw it up. It’s very common in psychiatry where doctors often give the first diagnosis that comes to mind without even so much as finding out the patient’s history. Makes me angry!

    My first encounter with a psychiatrist was at 18 and the diagnosis he gave me on the first and only appointment was BPD. He referred me on. Didn’t bother to dig deeper for other explanations, just slapped the BPD label down and my life was awful for it. Took about 5 years to get any decent treatment because of that one psychiatrist’s insensitivity to what his actions might mean for me. He was a private psychiatrist so I guess he could cherry pick the patients he wanted but he didn’t have the right to give me that diagnosis on the basis of one appointment. It still makes me feel fury when I think of it which, thankfully, isn’t often.

    Sorry for the rant.

  4. Thank you for this post. As an ms patient I can relate to the “it’s all in your head” as ms can have sx very similar to Fibro, in fact, as you probably know, some believe the two are related.
    My son has fibro (our own dx) and since son is young, it’s all in his head and no one will provide him with meds to help with his pain. He also has some disc problems in his back and a bad knee that needs surgery. Since ms and fibro pain are treated by the same drugs, I share mine with him. Not a solution, but it’s the only option available currently, as I can’t stand it for him to be in constant pain. He’s trying to get insurance through Obama care and hope for better treatment soon.

    • So sorry to hear about you and your son. Yes, a few years back, my differential diagnosis included MS but the MRI came back negative.

      I hope you can get insurance for him and a good doctor that will take his pain seriously. My pain started when I was 11 and it took a good 20 years before I found someone willing to listen to me. For a while, they even managed to convince me it was really all in my head and I didn’t seek any treatment.

      In the meant time, there are other things he can do to feel a bit better. It won’t take all the pain away but it will help. Moderate exercise, a good diet, heat, good sleep patterns, all that helps.

      Best of luck to both of you!

      • He tries to do some yoga stretches, but with his underlying depression, motivation is a real problem. I’m hoping for good things next year!

        Hope your pain is minimal! 🙂

  5. Thank you for writing this, I understand the situation in this post too well.

    I am in pain for years and I have medical problems but no one wishes to treat it because I am mentally ill, doctors treat me like I am lying or imagining symptoms, I finally got a diagnosis of fibromyalgia with luck but I didn’t received any pain medication or anything to help me, I have other undiagnosed medical problem that I know are not psychological and it’s terrible but no doctor wants to help me, they look at me, see that I act weird and anxious and tell me to go to a psychiatrist, they say it’s my anxiety and it’s all psychological and even refuse to treat the psychosomatic pain, if my pain was only from something like PTSD it’s still pain, stress and anxiety changes the body,the pain that comes from mental illness still hurts and is still physical in most cases, not that this is my case but it would be necessary to treat me even if it was.
    I was for awhile in a awkward situation were a psychiatrist refused to treat me without the opinion of a neurologist and exams and I couldn’t find a neurologist that wanted to help me and didn’t just look at me and sent me to a psychiatrist thinking it was all in my head.

    This is very common, especially for women with any invisible physical illness, at least the non-mentally ill patients have a better chance of convincing a doctor that they have a “real” condition, if you are like me and have a mental illness and a stigmatized developmental disability no doctor is going to take you serious.

    • My hearts cries for you. Yes, it is very common, sadly. Women get the worse part, I think but unfortunately men face a different kind of stigma. Fibro affects more women than men and when men talk about their pain, they’re perceived as weak or not manly enough.

      And yes, if you do not have the mental illness label stuck on your forehead, you are more likely to be taken seriously. It’s a shame and doctors should know better that to discriminate so blatantly.

      Personally, I’ve had to deal with the same situation you described. Being bounced from one doctor to the other, with no one willing to take my case. Too difficult, they say. And since I have medical training, it’s even worse cause they think I am just acting what I read on the textbooks.

      Like you say, pain is pain and it deserves attention, a judicious differential diagnosis and a proper treatment.

  6. This is applicable to a lot of physical ailments that you can’t see. I remember when I had my LEEP procedure done last year, I was supposed to be off of my feet for about a month. Two weeks into it, people just expected me to be all better. It came as a shock to everyone when I relayed the message from the doctor that I might not be back to 100% for six weeks or so.

    It makes sense, six weeks. It was the same deal after I had my son. I had more help when I was pregnant and far more able bodied!

    It just shows the level of ignorance that is out there.

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