Hysterical Symptom Diagnosis, Part 1 | Rheumatoid Arthritis Warrior

Hysterical Symptom Diagnosis, Part 1

Origin of the word hysterical

hysterical diagnosis medieval term sand castleI love etymology. Origins of words can reveal a lot. And sometimes, it can be hysterically funny—except perhaps in the case of the word “hysterical” as in a hysterical diagnosis.

The word hysterical is synonymous with the words psychosomatic or neurotic. It refers to physical illness which has no identifiable physical origin. Historically, psychiatrists used this label as an explanation for those who are “chronically ill.” The patients are believed to be expressing internal conflicts by persistently complaining of physical symptoms.

The root word of hysterical is thousands of years old. It comes from a Greek word, hystera. It is the word for uterus. Perhaps you already have noticed how similar it is to the word hysterectomy.

Medieval science and hysterical diagnosis

No offense guys, but as far as I can tell, most of the doctors over the centuries were men. You probably know that most people who have autoimmune diseases or invisible illnesses are women. Male doctors could not explain illnesses that they did not experience, so they blamed the feature which makes women distinct—the uterus.

Today we have blood tests, x-rays, MRI’s, DNA testing, and ultrasound machines. Therefore in our modern scientific world, the dinosaur called hysterical diagnosis, as I call it, ought to be extinct. I wish it were.

Recent example of hysterical diagnosis

A few months ago, I saw a friend take a hard fall onto concrete. After we iced her face, we took her to the ER for x-rays. We worried since she is over seventy years old, but her x-rays were fine.

She spent two weeks in the hospital. She could not stand on her own, and it seemed like she was afraid she might fall again. They ran some tests, but no definitive diagnosis was made.

Still not able to walk, my friend moved to a rehab center. Two weeks of physical therapy and we were all baffled how hard it was for her to walk. It was mystifying since her x-rays were all right.

After my friend spent several weeks using a wheelchair, a doctor finally repeated the x-rays. She had a fractured pelvis. We were stunned.

Lessons about hysterical diagnosis

1) Even I believed the “x-rays are fine” report. I know my friend is not hysterical. I should have doubted the x-rays earlier.

2) There is no excuse for not repeating the x-rays sooner. None of the doctors doubted the x-ray machine or x-ray technician or the doctor who read the x-rays. I am afraid that the only one who was doubted was my friend.

Funny thought: I was thinking that it’s too bad that they weren’t right. Too bad a hyster-ectomy can’t actually remove an invisible illness. I think what we actually need is a hysteria-ectomy to remove the hysteria—but not from the patient! Maybe we ought to remove the hysteria from those who doubt the patient.

Stay tuned! Next time: Hysterical Symptom Diagnosis, Part 2; the most hysterical diagnosis ever!

More Warrior

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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18 thoughts on “Hysterical Symptom Diagnosis, Part 1

  • September 18, 2009 at 9:41 am
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    Loved the funny thought. As I was reading this I was reminded of a George Carlin line where he asked ” Shouldn’t a Hernia really be a Hisneia” and a “Hysterectomy ought to be a Herterectomy”.

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  • September 18, 2009 at 10:45 am
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    That example of your friends x-rays is a good one. Too many times people on Medicare are not allowed the same tests as often as younger people with good insurance. (and people without insurance really have it rough) My primary doctors always consider if Medicare and/or my supplement will pay before ordering anything.

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  • September 18, 2009 at 12:08 pm
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    excellent blog Kelly. You speak the truth. I can’t tell you how many of my friends were told it is in your head by a couple of doctors until they found a doctor that took the time to repeat everything and took in all of their symptoms as a whole. You have to keep on keeping on with finding a dr. that will repeat everything and will take in your symptoms as a whole and not just rely on what the tests say. That goes for any disease. I know it is a pain to keep looking for and changing drs. but we have to. We have to in order to get the proper treatment so our bodies stop damaging themselves. I have noticed you write about the facts of RA and I write more about the emotions of RA. We should team up lol.

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  • September 18, 2009 at 1:50 pm
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    Given the history of repression and subjugation of women, it wouldn’t be surprising if many actual problems arose as a result of that: depression, anxiety and who knows what physical problems. I’m sure the diagnosis of “hysteria” was in part a (perhaps partly subconscious) effort to keep women in their assumed place. My mother wanted to be a doctor and was told women didn’t do that. So she had three kids and struggled with mental health her whole life …

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  • September 18, 2009 at 4:19 pm
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    Hi Kelly!

    I recently found your blog on Rheumatoid Arthritis, and I wanted to reach out. I’m the blog coordinator for EverydayHealth.com. We’re currently recruiting people to write a weekly blog post about their various health conditions and I thought you might be interested.


    
Everyday Health has over 25 million monthly unique visitors to their website, and there is a lot of potential exposure and traffic to come from blogging with the market leader in online health information. It’s also an excellent platform to promote education and awareness of issues associated with RA, and any cutting edge research or advice.

    
Let me know if this is something that you’re interested in and might like to talk more about.
 I enjoyed reading some of your old posts, and I think you have a unique perspective that Everyday Health readers would love for you to share.

    
Thanks so much!

    

Lee McAlilly

    Blog Coordinator, EverydayHealth.com
    lmcalilly (at) waterfrontmedia (dot) com

    Reply
  • September 20, 2009 at 12:26 pm
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    Thanks, Kelly. My RA taught me to trust myself. Growing up in Japan, I was taught to respect and not question doctors. The example of your friend confirms my new belief that doctors, medical technicians are human and technology can fail. But the pain is real. The pain tells us that something is not right. I have become an advocate for myself. I need to speak up and question the doctor when I know there is something wrong with me. I hope your friend recovered nicely.

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  • April 18, 2010 at 10:45 pm
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    My rhuemy recently had my hands x-rayed and told me there was no damage to my hands after 4yrs. which would make him *say* I didn’t have RA but as he looked at my hands he said *that’s RA*. When he looked at the huge nodule on my right elbow he said *that’s RA*. His only reason for doubt was b/c of the x-rays and the fact that I’d had HEP C. I didn’t get HEP C until after RA and I got it from an EGD and Colonoscopy center that is now shut down b/c 100’s got HEP C and AIDS. My hands look awful,the x-ray tech pushed my hands down flat for the x-ray, I had RA BEFORE Hep C. He can’t deny the Ra in my neck that I’m having surgery on 4/29 so :razzmad: ! This *HYPOCHONDRIAC* leaves you all with prayers for success with your poisons and painfree days and nights and may the Lord give You Peace and Rest. :rose:

    Reply
  • March 6, 2011 at 7:17 am
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    Not to take away from the point of your story, but I work in radiology and there are types of fractures that are considered “occult fractures” and they won’t show up on the x-ray until 7-14 days have passed, if at all. If a fracture is suspected clinically or the radiologist is suspicious, they will usually order repeat x-rays after a week or 2 if the patient is still having symptoms.

    Reply
    • March 6, 2011 at 11:05 am
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      Leslie,
      Thanks for your comment. That doesn’t take away from the story at all. I think it strenghtens the point that believing the patient is the only safe way to go. My friends xrays were not repeated soon enough and she was doubted. I’ve seen it in other cases and recently read statistics about how often films are read differently when they are re-read, even by the same radioloigst. I think the Elizabeth Cohen’s book was one source of that info and I I heard some stats on that at ACR last fall too. People assume an x-ray or scan is always “black and white.” I know I did. But it’s more subjective than that, which I’m sure you knew already.

      Reply
  • April 2, 2012 at 11:20 am
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    My mom took a fall a couple of years ago while working and landed hard on a concrete floor. She was about 65 years old at the time. They did xrays and said she was just bruised and banged up a bit. When she still had trouble walking they suggested physical therapy. After doing that with no improvement for several months her regular doctor, not the one in the ER clinic, finally decided to have the Xrays repeated. As a result, the THREE FRACTURES to her pelvis were discovered. Two of them were very hairline and the other was not. It was the one that she felt the most. Everyone doubted her and not the xray or the original ER doctor and radiologist. It amazed me. She worked like that for months because she trusted the docs and didn’t want to disappoint her employer. They actually changed her position at work so she could sit down and work. It was obvious by watching her walk that she was in pain. But, everyone listened to that xray and the doc more than to the patient.
    I have had similar situations with myself and this “inflammatory arthritis” that as of yet doesn’t have a more specific diagnosis. It is very hard to articulate the pressure you feel to produce symptoms that “fit”. Labs “ok” so you must be “ok”!
    I also went round and round with a beloved pediatrician regarding two of my children. We still use him as our children’s doctor, but my blind trust is no longer in tact. One child was eventually diagnosed with Cystic Fibrosis (kinda a major deal) and the other was finally referred to a pedi rheumy after my frequent and repeatedly bringing up her symptoms. I finally bought a pediatric rheumy’s book (“It’s Not Just Growing Pains”) and diagnosed her myself! Then I sent a long email to our child’s pediatrician. His emailed reply was a bit condescending. I eventually got my referral he had been hesitant to give me. Our daughter was diagnosed with Hypermobility and Raynaud’s. The pedi rheumy also recommended her to the pain management clinic at her children’s hospital. Over a year later she is much better, sleeps better, and knows how to manage her hypermobility to decrease her pain. The first time I mentioned my daughter’s blue colored legs to her pediatrician she was about a 18 months old. Over the years she would complain about her knees, her achilles tendon, her elbow, the pain in her red feet if she stood still too long. I brought everyone of those things to her doc. And, he did nothing. I think one of the major reasons he didn’t want to refer her to one of the three pediatric rheumalogists in our state was that he didn’t want to be thought of as not knowing his stuff and referring her “unnecessarily”. It helped that I had a personal connection with the pedi rheumatologist. I think the doc’s knowledge of my connection helped. But, my daughter still needed his referral to be seen.
    Didn’t mean to go on and on here. Just wanted to relate that I have most assuredly learned to be an advocate for my children and not blindly follow what a doc says just because they are a doc!
    Thanks for your site! It’s the one I always go to for good and solid information! It has helped me in many ways! God bless!

    Reply
  • April 3, 2012 at 9:50 pm
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    My father had a fractured pelvic ring that was never diagnosed until the Orthopedic Specialist was able to see the new bone growth on an x-ray 6 weeks after the fracture. He was in horrible pain for several months, unable to care for himself and uncomfortable in any position.

    Reply
  • February 9, 2013 at 1:24 am
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    The attempt to continue the long-standing tradition of labeling rheumatic symptoms as hysteria continues !!! A diagnostic category (SSD) that has important implications for people with rheumatology symptoms is making its way into the American Psychiatric Association-Diagnostic and Statistical Manual-V (DSM-V). Somatic Symptom Disorder is frequently inked with rheumatic conditions in the literature.

    Often SSD is identified as the diagnosis if the medical professional determines that the reported symptoms have no reasonable medical explanation or there is a diagnosed medical condition but the patient is pre-occupied with the disease or exaggerating symptoms. This is a very subjective diagnosis that will delay proper medical tests and treatment. In fact, the recommended practice when SSD is diagnosed is for doctors not to order investigative tests but to reassure patients that they are fine.

    Please consider signing this petition that asks that the authors of the DSM-V not include the Somatic Symptom Disorders (SSD) in the latest edition of the DSM.

    http://www.change.org/petitions/the-american-psychiatric-association-and-dsm-5-somatic-symptom-disorder-ssd-is-too-vague-to-be-published-in-dsm-5#share

    For further reading on how SSD misdiagnosis is related to RA see:

    http://www.healthcentral.com/rheumatoid-arthritis/c/80106/158680/ill

    Haven’t we progressed enough that patients should reasonably expect that their rheumatology symptoms will never be mis-labeled as a psychiatric condition??

    Reply
    • February 9, 2013 at 11:17 am
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      One more thought on this topic of the Somatic Symptom Disorders: I believe it is totally wrong, immoral in fact, to pathologize behavior that is acceptable in other settings.

      Researchers, medical doctors in training, PhD students are all APPLAUDED for spending countless hours focused on their chosen fields. No one pathologizes their behavior and labels them with a mental illness.

      In some research articles, rheumatoid diseases have been deemed by the MEDICAL profession as a medical emergency and a life-threatening illness. We deal with life-threatening side effects to medications as well. I’d say we have reasonable grounds for being, oh, a TAD bit concerned !!!

      I have been very grateful that Kelly has used her tremendous intellectual and personal talents to research this disease and help literally thousands of people and their families, however, her behavior would fulfill the criteria to be labeled with this mental illness. I also have used my tremendous drive and research skills to learn and share as much as I can about the disease. There is NOTHING wrong with this – it is a natural response to a health emergency.

      I do hope the RPF and rawarrior will hit this topic of Somatic Symptom Disorder hard when the DSM-V is released in May 2013. Thanks.

      Reply
  • July 22, 2014 at 2:48 pm
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    Had the same issue! Went to three doctors, one thought it was my back, I think one thought I was goofy. It took one MRI and 2 xrays, and a ton of pain. I could not walk with out a walker during this 4 month search. NEVER doubt your pain but doubt the dr who can’t read a xray!

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  • September 6, 2017 at 2:14 pm
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    I have been suffering for the last 18 months with constant weird symptoms (excruciating pain in my feet, rapid heartbeat, uncomfortable pressure at the base of my skull/top of my neck, daily flu-like symptoms, chest pressure, dizziness, crippling muscle fatigue) which seemed to fit the profile of Lyme disease. Since I live just 30 minutes from Old Lyme itself, and since I am (or, WAS) an avid hiker, Lyme made sense. But the treatment didn’t work, the Lyme test was negative, and I kept finding myself at my doctor’s office or the ER, sobbing in pain and clutching my chest. When an MRI, EKGs and a stress test were normal, the doctors got fed up with me. I was given antidepressants and anti anxiety pills and told to breathe into a bag and seek therapy for my “panic attacks.” Feeling helpless and desperate because nobody would help me, I dissolved into a depression after all, and ultimately missed my law school admissions exams and spent the summer in bed while my family believed the doctors and thought I was having some kind of a nervous breakdown.
    Finally, a blood test came back positive for a high RF level, and I was referred to a rheumatologist, who diagnosed me with RA. When I started collecting my medical records from the last year and a half, I saw that the very first doctor had noted high ESR rates and wrote “strong suspicion of rheumatological/autoimmune involvement” (nobody had ever told me). By a month later, that ER doctor’s comment was buried by a slew of other comments like “pt is clearly struggling with anxiety” and “refer to CBT as no physical illness is apparent.” One ER doctor even looked me in the eyes and said “you are not sick, you are stressed. Stop coming to the ER. At some point you will have to own up to the panic you are creating within yourself.”
    When I finally got to the rheumatologist, he said that all my symptoms could be explained by RA, and that he was tired of seeing patients written off as “having anxiety,” which he said is a common thread among his RA patients.

    Reply
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