As awareness grows around the phenomenon of size dysmorphia, I wanted to share some information and experiences in a single place so others know they’re not alone.
For an in-depth look at my experience with size dysmorphia, Alice in Wonderland Syndrome, and size kink, please see Size Dysmorphia: A Sizeshifter Origin Story.
I can’t remember when I first heard the terms “size dysmorphia” and “size dysphoria” but I know it appeared in conversations within the “Giant/tiny” community on Tumblr.
In the size community, size dysmorphia has become a shorthand for people who feel that the size of their body does not feel right. For some it’s a mild consideration, for others it can be a profound discomfort.
Even dysmorphia is an imperfect term, though it seems to fit better than dysphoria. I have used both over the years, I have seen others use both, and for myself I have settled on dysmorphia, because of some shared attributes with body dysmorphic disorder.
This phenomenon may be related to Alice in Wonderland Syndrome (AiWS), also known as Todd’s Syndrome or dysmetropsia. If you suspect you have this, it may be wise to seek out a therapist, neurologist, or other medical professional because at least half the cases seem to be related to migraines, tumors, or other health concerns.
A touching article in the NYT from 2014, I Had Alice in Wonderland Syndrome, shares a mother and daughter’s experiences with migraines and AiWS, which may have a genetic component. The article also offers research showing that the syndrome appears to be benign and without obvious cause in roughly half the cases studied.
Update: Diagnosis in 2021
I have received a formal diagnosis of AiWS from a neurologist who, miracle of miracles, experienced AiWS herself as a child.
I went to see her in fall of 2021 about migraines, and it was incredibly hard to be honest with her about my size feelings, but I felt it was important to be brave so I could learn more. Since I didn’t expect to be believed, I came armed with data from Daylio, a customizable diary app that lets me track these instances and then export to CSV.
(neurology, brain health)
Compiling data for my neurologist on my #SizeDysmorphia or possible #AiWS/Alice in Wonderland Syndrome. I’ve been tracking it since August 2020 & have 438 entries. Of those, 238 were small, 155 were big, & 45 were “normal” but that’s underreported. pic.twitter.com/C4P0y9F0Fl
— Elle Largesse (@mightytinygiant) November 11, 2021
I was flooded with relief when she started nodding immediately, and shared how frustrating she found the sensations of AiWS smallness when she was young. She called my size feelings “migraine-equivalent” and said that my hundreds of instances that I tracked in the app were each like miniature migraine-equivalent experiences. Which is staggering to consider, when I think about how often they happen for me. I can’t believe how lucky I was to stumble onto a doctor who had been through this, too!
I’m still dealing with more standard migraines, but I’ve had a CT and an MRI that both came back clear. My doctor said my AiWS and size feelings seem to be benign as long as they aren’t negatively impacting my life. (For example, the full migraines I have make it impossible for me to drive when they happen, but 99% of the time, I can tune out size feelings while driving. Size feelings were there when I learned how to drive, and I’ve been told I’m a fairly safe driver. If that ever changes, I promise I’ll prioritize safety first.)
For confidentiality reasons, I’m not going to share the neurologist’s name here, but you can contact me privately if you want to know more. I don’t know if she offers telehealth visits to patients outside of Texas, but I will try and remember to ask when I go for my follow-up visit.
It has taken me months to process my emotions about all of this, amid many other life stressors. It’s not often a person discovers that their sexuality and physical experience of the world are based in large part on “migraine-equivalent” brain experiences. But I always knew there was more to all of this for me than just a shortcut to pleasure. The only difference is that now I know there is a name for it, and proven research showing it’s not just me.
Besides, to quote Night Vale: “Pain is all in the mind. Unfortunately, so is your entire experience of the universe.” The good news is that this is true for pleasure, too.
I have been working with a somatic experiencing therapist who is kink-informed, and it has been tremendously helpful for me to work through my size feelings by having a kind of conversation with my body, as if she was her own person.*
Something I’ve been exploring is how my size feelings sometimes bring me a sense of rightness. Reading activists, poets, artists, and philosophers doing critical work around gender theory has introduced me to concepts like gender euphoria. I am a cis woman and can never understand the trans experience. I will always be grateful to listen and learn about these dimensions to the human experience, and use them to inform my empathy, activism, and my own gender identity and mental health.
In this case, I have found a lot of healing in trying to observe my size feelings without judgment. In the past, the discomfort, shame, and disorientation of my size feelings led me to compartmentalize all of them into a box labelled dysmorphia—even when those feelings brought me pleasure, confidence, safety, or joy. Each instance seemed like the exception to the rule. I’m beginning to interrogate the rule.
It’s worth mentioning that though (for me) the discomfort of the size feelings mostly come from within, there is also a deep discomfort that comes when interacting with others who deny or dismiss my experience.
The most common example of this comes with people around the kink community who want me to be a Giantess for them, without reading or caring about the “sizeshifter” in my bio, without even asking what size I feel on any given day. Worse, when I try to set a boundary around it, such as “I’m feeling tiny today,” and the other person will insist they are tinier, just to put me back in the role of being the larger one. The loss of agency, denial of humanity, and non-consensual objectification of that all feel awful, but a primary component of it is simply that someone I had hoped to trust is denying my lived experience and sense of my own body. The dissonance of it is disturbing and frustrating.
On the flip side of that, when someone asks me what size I’m feeling and then respects or affirms that, the feeling is comforting, uplifting, and downright wonderful. Euphoric. We all want to be accepted. We all have a very human need to belong. When someone acknowledges the size that I feel, it builds trust with them, and it also creates a sense of safety that helps me build trust within myself and my own internal experience. Finding the pockets of community where size feelings are acknowledged and accepted? Size euphoria!
Perhaps it is harmful in the long run to use a term like size dysmorphia because the language itself assumes my size feelings will always be uncomfortable, end of story, close the book. If I can approach them from a place of less judgment, I can ask my body how she genuinely feels about the sense that I’m 12 feet tall today, or too short to reach my own desk. Pulling away from an expectation of distress or even one of joy, allows me to simply be present. Managing my “meta emotions,” or how you feel about how you feel, has been a blessing.
I’ll leave you with these two poems that have helped me learn to talk to my body:
- The Body Is Not An Apology by the phenomenal Sonya Renee Taylor
- (contains mentions of disability, illness, domestic violence)
- For the Days When I Stop Wanting a Body by the incomparable Andrea Gibson
- (contains mentions of death, disability, wounds, illness, suicide, PTSD)
*For the record, bodies like mine are not inherently female. For me, when getting to know my body as someone I could talk to, I got a sense of several attributes and identities. One of those was gender, so I currently use she/her pronouns when talking to my body. I know gender is fluid, and a social construct, and leave the door open for change someday if that feels right.
Browse peoples’ experiences on Twitter with the #SizeDysmorphia tag.
Some examples of my own tweets. Click through to Twitter to see others’ responses.
What size are you feeling right now, denizens of #SizeTwitter?
I’ll start. I’m four inches tall today.
(CW mental health)
I’m exhausted and depressed, but not to the point it’s muting my #SizeDysmorphia, which is actually a good sign. I’ll take what I can get.
— Elle Largesse (@mightytinygiant) April 24, 2020
Feeling large again today. I know asking why doesn’t usually help when #SizeDysmorphia is random AF, but whyyy does work stress make me feel tiny and helpless sometimes and Giant and determined other times? And sometimes emotions don’t play into it at all. pic.twitter.com/RwbBSWRDZL
— Elle Largesse (@mightytinygiant) January 12, 2021
Scrubbing my nails w tea-scented soap & a soft cuticle brush & had a sudden visceral desire to feel it all over my body.
Oh. Guess I’m tiny right now? Whoah. Very tiny. Okay then. 😳
— Elle Largesse (@mightytinygiant) May 20, 2020
If I’m in a small room facing a doorway into a large room, my body defaults to larger.
I exercise near some tall powerlines, & often feel 150 ft tall bc of it. pic.twitter.com/46aevKjoZ0
— Elle Largesse (@mightytinygiant) May 5, 2020
This. This is what my brain has been telling me.
It’s usually about 5-15% of my brain space on any given day, but in quarantine it’s more like 25-50% or worse. The more I’m on Zoom calls w/ people on mobile phones, the more my brain makes me feel so, so small. https://t.co/Uay3rJT6hs
— Elle Largesse (@mightytinygiant) April 8, 2020
It’s getting to be almost a bad joke, how traffic can make me feel HUGE. Esp when it’s unexpected.
Stuck in traffic at 10pm, crawling slowly past downtown ATX bc I-35 is forever, eternally under construction.
Watching the skyline crawl past, I feel as if I can stretch my arm
— Elle Largesse (semi-hiatus) (@mightytinygiant) March 3, 2020