How to write about medical illness

How to write about: Amnesia

Hello writers! As part of Indie April I have decided to write some blog posts about how to write about different medical illnesses. 

As I reader I am often discouraged when there is medical misinformation in books; before medical school I never would have noticed, but now as a doctor I see it everywhere. I know that accurate medical information can be hard to find and even harder to understand, so I wanted to write some posts to explain certain medical information in a way that is accurate and easy to understand. 

Disclaimer: I am a medical doctor (or I will be when I graduate in May, but I am technically done with all my course work and have passed my boards, so I feel like this is an okay thing to say) but I am not giving information to diagnose you or to help you diagnose others, this is purely for help on how to write about medical illness. I am also not a writer, so this information will be more on the technical side, than it will be on plotting or characterization. Regardless, I hope you still find this information helpful!

What is Amnesia?

Amnesia is a catchall term used to describe someone experiencing memory loss. In the medical field this is further broken down into several specific type of amnesia, which I will define below:

Anterograde amnesia- “Inability to acquire, store, or retrieve new information long-term and consciously after a memory-impairing incident”

Okay let me break that down into non-medical jargon. 

“Memory-impairing accident” in this case is referring to a traumatic brain injury (TBI) which can be a sports injury, like a concussion, or other head injury. A person with this type of amnesia will be unable to form new memories. They can remember everything prior to the injury but have a hard time remembering things after the injury. 

This is can be transient (lasting only for a short time; impermanent) or it can be permanent amnesia. 

The famous medical case of this is the case of H.M, a patient who had his hippocampus removed in order to cure his epilepsy. As a side effect of this surgery, he was unable to form new memories, but had access to all of his old memories, and his procedural memories (the ability to swallow, eat, ride a bike, tie shoelaces, etc.). He was studied in 1957 until his death in 2008. The same doctor studied him everyday for years, and everyday the doctor reintroduced himself since H.M was unable to remember him from day to day. 

Retrograde amnesia-“Inability to consciously re-activate information that was stored long ago”

This type of amnesia is the type that more people are probably familiar with when it comes to writing. This is the loss of old memories, after a triggering event, which could be an injury/accident or a mentally traumatic occurrence. 

This is what I will primarily focus on in today’s blog post. Hopefully I will be able to lay out situations when this might occur, why this is happening and the likelihood that someone will recover their memories. I say “hopefully” because even for a doctor, this information is pretty complex. Not a lot is understood about how/why this happens and why some patients recover memories and others don’t. The below definitions are other types of amnesia that can overlap with retrograde amnesia and are included to fully explain how/why this is happening. 

Psychogenic amnesia-Broad term that refers to amnesic disorders that are linked to psychological factors; it makes no a-priori assumption about the nature of the associated psychological mechanisms

This type of amnesia is another broad classification that can overlap significantly with other types of amnesia including the inability to access old memories (retrograde amnesia).

Before a person gets psychogenic amnesia they commonly suffer from: 

  • a severe precipitating crisis (e.g. in a relationship or financial);
  • a past or current history of clinical depression, 
  • History of head injury or other neurological symptoms- can be a recent injury or a past injury

It is unclear how Traumatic brain Injury (TBI) and psychogenic amnesia are related; it could be that the mechanism of injury causes psychological distress to the point that the brain attempts to forget the event leading to amnesia. This area of medicine is still mostly theoretical.

Dissociative amnesia-“Psychiatric disorder characterized by an inability to recall personal information that is underlain by the psychological mechanism of dissociation”

This type of amnesia occurs when a person blocks out certain information, usually associated with a stressful or traumatic event, leaving him or her unable to remember important personal information. This is more than just a normal level of forgetfulness, and can include memory loss of the traumatic event. The traumatic event does not have to be a brain injury, it can be any stressful event, such as the death of a loved one.

With dissociative amnesia, the memories still exist but are deeply buried within the person’s mind and cannot be recalled. An example of this would be like if you stored something on a flash-drive and then lost it; the information still exists but you can no longer access it. The memories might resurface over time if something in the persons surroundings triggers memory recall.

Functional amnesia- Amnesia usually without evidence of brain damage on conventional structural imaging, and of an unsure cause

This is a type of amnesia that occurs with no evidence of brain damage on imaging. Translation: the patient has lost memory but there isn’t any medical reason for it. This can occur after an injury and its relation to psychogenic amnesia is unclear.

To summarize all that nonsense for non-medical people:

Amnesia is a tricky animal. Doctors and researchers are unsure why patients who suffer brain injury are unable to recall memories. It is likely a type of Dissociative/Functional amnesia (also known as Acute Psychogenic amnesia)- meaning that that patient has lost memories of events that occurred prior to the injury, but there is no evidence of brain injury on brain scans. 

Hopefully I have cleared some of that up, and didn’t make it more confusing.

Essentially, if you want to write a story in which a character gets into a car accident, hits their head, and then wakes up having lost several years of memory: that is not an unreasonable or medically inaccurate storyline. The character would likely still remember basic things like how to eat, how to tie their shoes etc (Procedural memory). They might even remember their names, birth dates, certain life events, and then they hit a mental wall and remember nothing after a certain point. 

How do you treat Dissociative/Functional Amnesia?

Short answer: We don’t

Long answer: After an injury of this type patients would probably go to a rehab facility to recover from their injury. But as far as a treatment for the amnesia specifically, there isn’t much doctors can do because it’s still so difficult to know what exactly caused it. More than likely once a patient is physically well enough to go home, they will be discharged. If they are otherwise stable and not a danger to themselves/others and they can function independently, then from the hospital’s standpoint there is no reason to keep them. A patient who has lost significant amounts of memory would likely need to go to a psychiatrist or other counselor for help on how to adjust to the loss of their memories.

Will the memories come back? Maybe, maybe not. From a writing perspective either way you choose to write it would be medically accurate. Some patients recover memories and some don’t. If they do get the memories back it will likely occur slowly over time. 

If you made it through this post and understood any of that then you get a gold star for today, because honestly this stuff is over my head so I can’t imagine trying to research this without any prior knowledge. I hope you found the definitions helpful. I wanted to include the medical jargon so that if you encounter it in your research you will be able to refer back to this post.

Man does any one else’s brain hurt now? Because my brain hurts. This is too much thinking for a Friday afternoon. 

More reading material

I found this great NYT article about Dissociative Fugue- a psych disorder where the person has not only lost a chunk of memory but also doesn’t remember who they are. You can find that article here: https://www.nytimes.com/2007/04/17/health/psychology/17brody.html

More Questions?

Honestly if you don’t have more questions I would be stunned and would probably grant you and honorary MD, because I have more questions and I’m a doctor.

Feel free to drop a comment and ask about a specific scenario that I didn’t touch on in this post (for example if you need to know how a doctor would explain this diagnosis to a patient). I would be happy to provide those types of details, but as this is my first post of this type I’m not sure exactly what is you might need.

Also let me know if something doesn’t make sense, isn’t well explained, or if I didn’t touch on the exact aspect of amnesia that you wanted to know about.

Citations

I felt like it was necessary to include where I got my definitions and scholarly information, just so you know I didn’t make it up, or if you want to read about it in the future:

Markowitsch, H. J., & Staniloiu, A. (2012). Amnesic disorders. The Lancet,380(9851), 1429-1440. doi:10.1016/s0140-6736(11)61304-4

Harrison, N. A., Johnston, K., Corno, F., Casey, S. J., Friedner, K., Humphreys, K., . . . Kopelman, M. D. (2017). Psychogenic amnesia: Syndromes, outcome, and patterns of retrograde amnesia. Brain,140(9), 2498-2510. doi:10.1093/brain/awx186

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