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Wednesday 15 May 2019

Poorly Named Illnesses

I have been noticing more and more that so many illnesses have insufficient labels/names. I think that when we get down to subgroups or modified designations for established diseases, creativity on what to call new findings is lacking.

Take Chronic Pouchitis for instance. Technically it is the inflammation of an internal J-Pouch, created with the small intestine to mimic the large intestine after a total colectomy.
In simpler terms, Chronic Pouchitis is Ulcerative Colitis without the large colon.
See I have Crohn's Disease in my small intestine, which was found after my J-Pouch surgery. It behaves quite differently to the inflammation in my J-Pouch. Though, because Ulcerative Colitis is very specifically in the large colon, and since I no longer HAVE a large colon, I guess they had to give it a new name. Plus, we cannot simply add it to the Crohn's Disease diagnosis, because it is not really Crohn's Disease within the pouch. Both illnesses require separate treatments. They respond differently to medications, to food, to everything.
Pouchitis, though?
It sounds made up!

On one of my favourite shows, a lovely young girl came on and spoke about Selective Mutism.
I tried to hold back my judgement, but I could not help rolling my eyes. I even spoke with someone who knew much more on the subject than I to ask about the poorly named anxiety disorder. I hate to admit it, but until I had that conversation, I was convinced it was another 'grasping-at-straws' diagnosis under the umbrella of social anxiety.
Now I know better.
I still am not knowledgeable about the disorder, but I am also not dismissive.
The name, however, is inviting misunderstanding. Selective Mutism. Reminds me of 'selective hearing' - what we say when a husband says he did not hear his wife for the fifth time that day to take out the trash. Using the word "selective", in my opinion, is the issue. In the medical community I am certain this word means something else, but from a common standpoint, 'selective' requires a decision. To be selective is to take action - to make a selection about when to be mute.
What if we called it:
Anxiety-Induced Mutism (AIM)
Recurrent Mutism
Anxiety Verbal Deficit
Sporadic Mutism
Verbal Paralysis
Recurrent Verbal Paralysis
Limited Mutism

Some other ridiculously named diseases - resulting in a habit of assuming it is not actually a real thing - include:

▪︎Restless Leg Syndrome
▪︎Tennis Elbow
▪︎Chronic Fatigue Syndrome
▪︎Generalized Anxiety Disorder
▪︎Binge Eating Disorder
▪︎Overactive Bladder
▪︎Asbestosis
▪︎Honeycombing
▪︎Thin Basement Membrane Disease
▪︎Nutcracker Syndrome
▪︎Abdominal Wall Pain Syndrome
▪︎ANOTHER Syndrome (yes this is a real thing)
▪︎Dead Arm Syndrome
▪︎ Marble Bone Disease
▪︎Dumping Syndrome
▪︎Irritable Bowel Syndrome
▪︎Irritable Bowel Syndrome with Diarrhea
▪︎Adrenal Crisis
▪︎Antisocial Personality Disorder (frankly, any of the Personality Disorders have unfortunate names)
▪︎General Adaptation Syndrome
▪︎Imposter Syndrome
▪︎Intermittent Explosive Disorder
▪︎Mixed Episode
▪︎Night Eating Syndrome
▪︎Nightmare Disorder
▪︎Ondine's Curse (yes, curse.)
▪︎Obsessive Love Disorder
▪︎Partialism
▪︎Sleep Paralysis

I am positive I could continue for hours just looking for diseases with unbelievable names. Some titles are vague, some are too specific, some sound legitimately formed from a child's imagination, but all of them are considered to be very real illnesses and disorders.
When you have a disease that sounds made-up, though, convincing doctors to take you seriously becomes a tall order. How would you respond if someone told you he/she had Ondine's Curse?

Do you know of any other poorly named diseases that should be included in this list?

1 comment:

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