If you’re reading this, chances are good that you’ve got some sort of health issue; according to one study, over 95 percent of the world’s population has health problems, and over a third have more than five ailments. When those conditions present clear symptoms, they’re fairly easy to diagnose—if you’ve got a herniated disc, for instance, you’ll know immediately that something’s wrong.
However, some conditions are more difficult to suss out. When the physical symptoms are subtle or nonexistent, physicians might miss the issue entirely, and people can go for years without knowing that they’re different from their peers.
We looked into a few strange conditions that are often underdiagnosed, then researched the symptoms. We also reached out to a few people who have these conditions to find out what they’re really like—and how they realized that they weren’t like everyone else.
1. Ordinal Linguistic Personification
Technically, ordinal linguistic personification (OLP) is a type of synesthesia (and we’ll discuss the more well-known variant of synesthesia in a moment). People with this condition see letters and numerals as having personality, gender, and other “human” characteristics.
That doesn’t mean that they actually believe that letters are people—they just get the sense that they have distinct personality traits.
“I have synesthesia where letters and numbers have personalities and colors, also known as ordinal linguistic personification and grapheme-color synesthesia,” Cassia Watts, a marketing professional with Little Fella Marketing, tells Urbo.
“I realized I had synesthesia when someone pointed out how weird my thoughts were. I essentially thought everyone else picked this up from how they [learned the alphabet].”
“For example, the word ‘entrepreneur’ is easy for me to remember to spell, because R and E get along very well. R is a quiet alpha, and E, her submissive follower. P is an awkward nerd that doesn’t really fit in with these groups of letters, and so on. It is as if I am looking at this group of letters as if they were The Breakfast Club.”
We imagine that would make spelling bees pretty interesting.
Many individuals with OLP also have the aforementioned grapheme-color synesthesia, which means that they see numerals and letters as having distinct coloring or shading. The experience differs from person to person, but OLP isn’t a serious problem—in fact, it can be helpful in certain situations.
“It only interferes in my life in good ways,” Watts says. “It can’t be classified as a ‘disorder,’ because it actually helps more than harms. I can remember phone numbers and word spellings extremely well.”
Caitlin O’Malley, another person with OLP, explained in a Medium piece that the condition has a few minor drawbacks.
“I’m actually unusually horrible at math,” she wrote. “A psychology major friend of mine told me that some scientists think OLP might actually interfere with learning math, since the way we’re taught math in school typically doesn’t take into account made-up number personas, and it can get confusing for people like me.”
When you hear the term “synesthesia,” you probably think about chromesthesia (unless, of course, you’ve never heard either term before). Put simply, people with chromesthesia can “hear colors.”
More accurately, a person with this condition will experience the sensation of color when they hear certain sounds. It often corresponds to pitch; the musical note A, for instance, might sound red, while a G might sound yellow. The exact experience varies from person to person; one art teacher described the experience of listening to rapid chord sequences as “somewhat like fireworks exploding.”
If you’re pursuing a music career, that can be a major advantage. Tori Amos, Duke Ellington, and Pharrell Williams have chromesthesia, per Mental Floss, as does legendary songwriter Billy Joel.
“When I think of different types of melodies which are slower or softer, I think in terms of blues or greens,” Joel told Psychology Today. “When I have a particularly vivid color, it’s usually a strong melodic, strong rhythmic pattern that emerges at the same time. When I think of [those] certain songs, I think of vivid reds, oranges, or golds.”
Joel also indicated that he has grapheme-color synesthesia.
“Certain lyrics in some songs I’ve written, I have to follow a vowel color,” he said. Strong vowel sounds, for instance, are a shade of blue or green.
“I think reds I associate more with consonants, a ‘t’ or a ‘p’ or an ‘s,’ something which is a harder sound,” he explained.
While we’re on the subject, we should note that various other types of synesthesia—conditions where the senses get “mixed up” with one another—exist. Chromesthesia is thought to be the most common, but there’s also conditions like misophonia, in which repetitive sounds become excruciating over time (there’s an in-depth piece on that condition here), and lexical-gustatory synesthesia, in which people say that they’re able to “taste” words.
We’re just scratching the surface; in total, there are at least 80 different types of synesthesia. So what causes it?
We don’t know exactly, but some research indicates that different types of synesthesia might be somehow linked with autism. A Cambridge University study found that synesthesia occurs in 7.2 percent of the general population, but that 18.9 percent of people who have been diagnosed with autism have some form of synesthesia.
That’s not to say that synesthesia is always tied to genetics. Many researchers believe that it can be triggered by a childhood experience—for instance, if you see a brilliant shade of red while listening to a song in E major, your brain might connect the two experiences, and you might develop a form of chromesthesia as a result.
3. Visual Snow Syndrome
“For most of my life, I didn’t really realize I saw things differently from everyone else,” Kristine McKinney, marketing director at The Indigo Knight, tells Urbo via email. “I didn’t know it had a name until about three years ago.”
McKinney has a rare eye disease called visual snow syndrome. It’s pretty much exactly what it sounds like; patients see flickering dots in their vision that resemble snow. Currently, scientists believe that it’s an issue with how the brain interprets the information it receives from the eyes, but it’s rare enough that there’s not a lot of research on the subject.
“I see a subtle, dynamic, ‘flashing’ visual snow layer over my entire vision, with some ‘cloudy’ areas that obscure my vision a little bit more. It’s the worst at night—my vision gets noticeably blurry in low light, and the visual snow is more pronounced, so it’s even harder to see. Instead of just seeing shades of gray, I see ‘colorful’ snow, so I have such a hard time distinguishing details in low or no light.”
Because she’s always had visual snow syndrome, McKinney assumed that it was normal. She has trouble explaining exactly what it looks like—which makes sense since it’s always been a part of her life.
“It’s actually hard to describe the visual snow because it’s like trying to look at a floater in your eye, except even harder to pinpoint,” she explains. “I always keep the blue-light filter on and keep my cell phone lighting much lower than most people. Even then, it can still feel too strong and cause a headache.”
While visual snow syndrome is thought to be a rare condition, researchers don’t know exactly how many people suffer from it. According to the Visual Snow Foundation, many patients never realize that they have the condition; patients are usually diagnosed after complaining about side effects such as migraines.
“[The snow] seems to be made up of very small ‘pixels,’ except they seem to be non-existent at the same time,” McKinney says. “It appears to be flashing, but somehow I can’t see it flashing. It is very strange to be able to perceive something that I cannot ‘see.’ That’s probably why people describe it differently.”
In McKinney’s case, the condition is less noticeable in bright light, and she says she often forgets about it in those situations.
“I am sensitive to artificial bright light, so I can never watch TV or use a computer in a dark room, otherwise I’ll get a headache,” she says. “I also see ghosts of objects very easily—when you stare at something for a while, and you look at a white wall, and then you see an image of the opposite color of that object.”
“It can be frustrating or embarrassing at times, but I’ve dealt with it so long I am just used to it. I sometimes wonder what it’s like not to have visual snow syndrome and wonder what the world would look like. As an artist, I’ve been meaning to create an image of exactly what I see.”
Currently ,there’s no treatment or cure for visual snow syndrome, although some of the side effects associated with the condition—migraines, for instance—respond well to certain medications.
4. Situs Inversus
We know, we know: Situs inversus sounds like a Harry Potter villain, or possibly one of the lesser Roman emperors. It literally means “inverted organs,” and if you’re wondering what it is—well, it’s right there in the name.
People with situs inversus have their internal organs positioned on the opposite side of the body from where those organs are typically found; their hearts beat on their right sides, for instance, and their livers are on their left.
While that sounds terrifying, situs inversus doesn’t always impair development, and in many cases, it doesn’t seriously affect the patient’s health—at least, not unless they develop other conditions that require treatment. Today, most cases of situs inversus are recognized early, but that’s not always the case; singer Donny Osmond only realized that he had situs inversus when his appendix burst at 15.
In some cases, physicians misdiagnose the condition, assuming that mirror-image x-rays are the result of a technician’s inexperience rather than accurate images of a mirror-image patient. Because situs inversus is linked to serious health conditions (including cardiac issues), patients should be monitored regularly. They also need to take special precautions to prevent catastrophic medical accidents.
“For the last twelve years I have worn a MedicAlert bracelet on my left wrist to notify people of my rare condition,” wrote Saskia Solomon, who has full situs inversus, for The Guardian. “Turn it over, and emergency medical staff are informed that I have ‘Complete Situs Inversus Normal Ciliary.’ Rather than being simply an accessory or conversation piece, it serves the valuable purpose of preventing the somewhat unfortunate-sounding possibility of having an operation on the wrong side in an emergency.”
Fortunately, situs inversus is one of the only conditions on this list with a simple diagnosis: Get an X-ray or an MRI, and you’ll immediately know whether or not it’s an issue. If dozens of excited physicians and medical students start pouring into your examination room, you’ll know that something’s up.
Picture a cat playing with a purple ball of string. Have a decent mental image?
If you have aphantasia, that little experiment is impossible. Also called “mind blindness,” the condition prevents patients from visualizing images. That doesn’t mean that they’re less intelligent or capable than others—and in some cases, they’re unaware that they’re missing a crucial cognitive ability.
“I always knew something was different about my memory,” Nicole G., who has aphantasia, tells Urbo via text. “I was diagnosed ADHD in grad school, and I attributed a lot of it to that. I really only realized that mental imagery was a part of it, too, about a year and three months ago. I still feel kind of dumb for not realizing it sooner.”
For many aphantasiacs, the revelation isn’t that they’re unable to conjure up mental images; it’s that other people have the ability to do so.
“I was sitting around a campfire, and my friend said something along the lines of, ‘I can still see it…’ and closed his eyes,” Nicole G. says. “I guess I was just in the right state of mind, so to speak, to follow up on that and ask what he saw. He gestured as if the things he talked about were in front of him, and it sparked a conversation that lasted long into the night about visualization.”
“When I got back from camp, I googled ‘unable to visualize’ and found some articles about aphantasia.”
We should note that Nicole hasn’t received an official diagnosis, but few people with the condition are actually diagnosed. While aphantasia is thought to affect 1 to 3 percent of people worldwide, scientists have only recognized it as a legitimate condition in recent years. It can affect patients’ ability to learn certain skills, but it doesn’t always prevent them from becoming successful; Blake Ross, programmer and co-founder of Firefox, is one prominent aphantasiac.
“One positive aspect is that whenever you hear someone say, ‘You can’t unsee that! Gross!’ I’ve already unseen it,” Nicole G. says. “At the same time, I don’t know what my friends or family look like, although I can recognize them … and I remember trying so hard to count sheep as a kid and feeling dumb for not getting it.”
Those last sentences might seem confusing if you don’t have the condition; people like Nicole can recall specific details without actually visualizing those details. For instance, they might be able to say, “My mother is a blonde woman with blue eyes,” but they wouldn’t be able to recall her actual image.
As you might expect, the condition has its drawbacks. Nicole went to school to be a design engineer, but she was unaware that her inability to create mental images was holding her back.
“I was accepted at the University of Delaware and worked my [butt] off, never realizing that the others could ‘see’ the schematics even when not looking at them,” she tells us. “I fell behind, ultimately changing majors several times.”
“Since I have realized the nature of the differences in how I think versus the ‘norm,’ I have been able to adjust how I communicate and work with people,” she says. “I’ve been able to simply say, ‘Those directions don’t work for me. Can you help me understand without having to picture it?’”
Over time, she has made adjustments. We found Nicole in an online community for people with aphantasia where members share tips and compare life experiences.
“I’ve become more confident in my abilities and myself, and feel far less need to apologize for myself,” she says. “ADHD may have its stigmas, but there are many who recognize its strengths and are happy to work with the weaknesses. With aphantasia, it either never comes up, or I end up having to explain it.”
However, she says that it does affect her social life.
“Think of how a relationship would be with someone who is ‘out of sight, out of mind,’” she says. “I feel grief over all the years of not knowing [why I was different], but I guess I had to get through all of that before I could be who I am now. Things continue to get better as I learn more about myself and other people.”
And to many people with aphantasia, people who can picture things are the weird ones.
“I still think it’s unsafe to drive with pictures in your brain, but I’m told it’s not like that,” she says with a laugh.