Can feel how the middle finger becomes two meters long • The doctor: Unpleasant – and underdiagnosed
Children are usually affected. But for Josefine Lindgren, it has happened regularly ever since she was ten years old. She feels that her body is changing proportions. It mostly happens when she closes her eyes, but lately the feeling remains even when she opens her eyes.
– Imagine that you have a visual image of how big everything is. Everyone knows roughly how big the fingers and toes are, but that distorts the truth. It happens so extremely quickly and is very unpleasant, she says.
For over twenty years, Josefine Lindgren has been affected by her unpleasant experiences approximately every three weeks, and today it helps psychologically to talk about it, she says. But when Josefine was little, she had trouble sleeping and avoided telling stories, for fear of being classed as crazy.
– I thought I was going to be admitted to a psychiatric hospital and was very afraid of that, she says.
“The feeling is real”
The condition is called Alice in Wonderland syndrome. Just like the fairy tale character, body parts change, the sufferer experiences. The syndrome is recognized in the scientific community, but it is very rare.
– What it’s about is that you suddenly perceive, for example, an arm or a leg as much bigger or much smaller, so that you get a distorted picture of reality, says doctor Mouna Esmaeilzadeh.
For example, Josefine can experience her arm growing several meters.
– It’s my limbs that’s what happens. It feels like body parts are changing. The feeling is real, says Josefine Lindgren.
Undocumented – but may be more common than thought
When Josefine googled her experiences, she found the condition, and understood that it was what she was suffering from. She has not been diagnosed by a doctor, but on the other hand, very few have.
– There are less than 200 cases documented (in the world) in the medical literature since 1965. So it is relatively undocumented, and perhaps underdiagnosed. There is a lack of robust research on it, says Mouna Esmaeilzadeh.
According to Esmaeilzadeh, there are studies that indicate that 30 percent of teenagers have experienced symptoms consistent with Alice in Wonderland syndrome at least once. But it is far from that many who get permanent symptoms.
– It is usually short-term and transitory. But can be experienced as very unpleasant, says Mouna Esmaeilzadeh.
“Like a horror movie”
It can also be about experiencing external objects as larger or smaller than they are. Scientists today do not know exactly what causes this, but there are theories.
– One of the most common theories is that the syndrome may be linked to changes in the brain’s electrical activity in areas that affect vision and spatial perception. The condition is thought to be triggered by conditions such as migraines, epilepsy, infections (such as Epstein-Barr virus), and sometimes by stress or lack of sleep. But you would need a lot more research, says Mouna Esmaeilzadeh.
There are currently no specific cures for Alice in Wonderland syndrome. Mouna Esmaeilzadeh describes the syndrome as scary, just like what affected Josefine.
– It feels like a horror film. I think man has a fear of abnormal portions on the human body because we are not used to it. No one is seven meters tall and looks like Slender Man (a horror movie character). We have an image of how we should look and when it doesn’t match, it becomes uncomfortable, says Josefine.