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For these parents who lost their daughter on 9/11, life couldn't stop. They also had a son.

Finding purpose after the loss of a child.

True
Anything but Average

The Cottoms were a pretty typical American family before Sept. 11, 2001. Clifton and Michelle were the parents of two wonderful kids: Isiah and his younger sister, Asia. The kids were close, and the foursome was a family unit that was full of love and life.


All photos from Michelle and Clifton Cottom, used with permission.

But all of that changed on one heartbreaking day.

When Asia was just 11 years old, her life was cut tragically short.

A passenger on United Flight 77, headed to California for a school field trip, Asia died when the plane crashed into the Pentagon.


Michelle, an equal employment opportunity officer for a federal agency in Washington, D.C., and Clifton, a behavioral technician with the District of Columbia Public System, were suddenly faced with every parent's worst nightmare: a life without their child. And to say that her brother, who was 17 at the time, was devastated would be a gross understatement.

Following Asia's death, the Cottoms' lives changed in an instant.

No parent imagines losing a child — and so no parent is prepared to move on in life without her. In the blink of an eye, the Cottoms, still parents to 17-year-old Isiah, had to learn to function in a whole new way.

"We just went through the motions," Michelle said about their lives immediately following the plane crash. They faced life by waking up and taking each minute as it came. "We tried to make some sense of what was really going on," she shared.

Despite being a big brother with a hole in his heart, Isiah was a source of strength for his parents. And that strength helped them with their own grief.

“They played, laughed, and cried together," Michelle told me of Isiah and Asia's relationship.

Isiah was a rock for his parents, even while grieving the loss of his best friend. "He helped his fatherget closer to God by illustrating his faith," Michelle said. "Isiah dropped to his knees and immediately began to pray when we told him about the plane crash."

Michelle and Clifton admired the amount of strength and maturity their son possessed at the young age of 17.

Losing a child is hard enough. Losing a child to an act of terrorism that is the center of national attention adds another layer of complexity.

"When a tragic world event such as 9/11 occurs, it riddles individual families with unimaginable trauma and pain," Dr. Fran Walfish, a relationship psychotherapist and author of The Self-Aware Parent, told me.

Like many Americans who were devastated by the atrocities committed on 9/11, some of Isiah's peers also experienced feelings of vengefulness. And so just as he had inspired them with his maturity and faith, Isiah's parents helped him deal with the anger, hate, and pain that swirled around him every day.

“He had to deal with the pressure and questions that came to him from his classmates and friends. All of who, just like a lot of Americans, wanted revenge," Michelle recalls. Isiah faced all of these challenges and more with grace and strength.

“We instilled in him that revenge and hate was not an option even though everything around us was going to war."

There is no "new normal."

I asked Michelle if there's any way to settle into a new normal after such a devastating loss. The answer was clear: “Losing a child is not normal, so there will never be a 'new normal.' We live each day one at a time," she explained.

When it comes to parenting, people who have more than one child can't just check out completely when one dies to deal with their own grief. But as Michelle points out, Isiah was 17 and didn't require as much hands-on parenting as a younger child would. Still, even with an older child, there are pitfalls and ways that grieving parents could respond that don't help the child who is left behind.

"The parents had two children and were now left with one," Dr. Walfish noted. "It would be understandable if they held tighter and overprotected their surviving 17-year-old son."

And yet, that wasn't what the Cottoms did. They gave their son room to grow and to grieve. "We always talked to him about his feelings, hurt, pain, anger, and frustrations," Michelle said.

While some parents of younger kids might need to rely on their adult friends and family members to fill in the gaps and nurture their child as they too continue to grieve, Isiah was older and had a meaningful friendship in place to help him through the early stages. During the initial weeks and months following Asia's death, Isiah spent a lot of time with his cousin Mike, who was one year older and with whom both he and Asia had a good friendship.

As time went on and the Cottoms worked through their pain, they were able to arrive at a place together where their daughter and sister remains alive and well in their hearts, minds, and souls.

“We talk about her often and daily," Michelle said. “It is not painful — it is thoughtful and on purpose. Our memories are full of joy not the pain and sting of death."

Following Asia's death on 9/11, the Cottoms received an outpouring of financial contributions.

Many people and places — including schools, churches, boys' and girls' clubs, social clubs, companies, and more — sent money in Asia's name.

“This outpouring of generosity is what motivated us to create a scholarship fund in honor of our daughter," Michelle said. “Asia loved to learn, and even at 11 years old, [she] had big plans to attend college in California to become a 'baby doctor' — a pediatrician."

An added touch of heart-wrenching meaning was found in exactly how people gave: Many of the financial gifts were made in denominations of 11, such as 11 cents, $11, $111, and so on, symbolizing Asia's age at the time of her death.

The result of the generosity of others and the Cottoms is the Asia SiVon Cottom (ASC) Memorial Scholarship Fund, a 501(c)3 charitable organization that was created to honor Asia's life.

“Awards are made to deserving students who excel academically with special consideration given to students interested in math, science, and information technology," Michelle explained.

To date, the Cottoms have awarded over $250,000 in scholarships to students through their fund. “Our ASC scholars are now teachers, nurses, analysts, contract negotiators, engineers, and providing legal services, to name a few," Michelle said.

The Cottoms also wrote a book called "Asia's New Wings: The Untold Story of a Young Girl Lost on 9/11."

“It is a story about Asia's life, passion, legacy, and how to move on after experiencing loss," Michelle said. The book talks about how the Cottom family turned the most tragic thing that could have happened to them into “an opportunity to immortalize Asia and educate a nation."

Book jacket from "Asia's New Wings: The Untold Story of a Young Girl Lost on 9/11."

“We were motivated to write the book because many people keep telling us that we needed to share Asia's story … many had no idea children were lost during the 9/11 terrorist attacks," Michelle shared.

The Cottoms have found that the book not only helps parents who have lost a child, but also those dealing with other types of grief — in addition to allowing them to find “some level of closure" themselves.

“The Bible says a peace that surpasses all understanding. We have learned to accept what God allows whether we like it or not," Michelle said. “We have learned how to live on."

The Cottoms have learned that as time goes on, so does their love.

Losing a child is “unnatural and unfair," Michelle said. Parenting after such tragic loss will forever be an experience that only those who have lost one of multiple children can fully understand. But through their story we see the role that faith, friends, honesty, and love played in helping them all stay whole and make it through.

Today, Michelle says that despite the ways in which their life might seem drastically different, the only thing that's really changed is that Asia is no longer here on earth. They are still her parents. And she is forever their daughter.

“She remains alive and well in the hearts of all who knew and loved her."

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How can riding a bike help beat cancer? Just ask Reid Moritz, 10-year-old survivor and leader of his own “wolfpack”

Every year, Reid and his pack participate in Cycle for Survival to help raise money for the rare cancer research that’s helped him and so many others. You can too.

all photos courtesy of Reid Moritz

Together, let’s help fuel the next big breakthrough in cancer research

True

There are many things that ten-year-old Reid Wolf Moritz loves. His family, making watches (yes, really), basketball, cars (especially Ferraris), collecting super, ultra-rare Pokémon cards…and putting the pedal to the medal at Cycle for Survival.

Cycle for Survival is the official rare cancer fundraising program of Memorial Sloan Kettering Cancer Center (MSK). One hundred percent of every dollar raised at Cycle for Survival events supports rare cancer research and lifesaving clinical trials at MSK.

At only two years old, Reid was diagnosed with pilocytic astrocytoma, a rare type of brain tumor.

Pediatric cancer research is severely underfunded. When standard treatments don't work, families rely on breakthrough clinical trials to give their children a real shot at long-term survival.

When Reid’s chemotherapy and brain surgery didn’t work, he was able to participate in one of MSK’s clinical trials, where he’s received some incredible results. “Memorial Sloan Kettering has done so much for me. It's just so nice how they did all this for me. They're just the best hospital ever,” Reid recalls.

And that’s why every year, you’ll find Reid with his team, aptly named Reid's Wolfpack, riding at Cycle for Survival. It’s just Reid’s way of paying it forward so that even more kids can have similar opportunities.

“I love sharing my story to inspire other kids to PERSEVERE, STAY STRONG and NEVER GIVE UP while also raising money for my amazing doctors and researchers to help other kids like me.”

Reid remembers the joy felt bouncing on his father’s shoulder and hearing the crowd cheer during his first Cycle for Survival ride. As he can attest, each fundraising event feels more like a party, with plenty of dancing, singing and celebrating.

Hoping to spread more of that positivity, Reid and his family started the Cycle for Survival team, Reid’s Wolfpack, which has raised close to $750,000 over the past eight years. All that money goes directly to Reid’s Neuro-Oncology team at Memorial Sloan Kettering.

In addition to cheering on participants and raising good vibes at Cycle for Survival events, Reid even designs some pretty epic looking merch—like basketball shorts, jerseys, and hoodies—to help raise money.

If you’re looking to help kids just like Reid, and have a ton of fun doing it, you’re in luck. Cycle for Survival events are held at Equinox locations nationwide, and welcome experienced riders and complete newbies alike. You can even join Reid and his Wolfpack in select cities!

And if cycling in any form isn’t your thing, a little donation really does go a long way.

Together, let’s help fuel the next big breakthrough in cancer research. Find out more information by checking out cycleforsurvival.org or filling out this interest form.

Popular

Millennial dad of 3 shuts down boomer parents for their 'ridiculous' holiday expectations

"Why is it that every time I have to make the effort for you, yet you can't do the most basic thing for me?”

A Millennial dad has had it with his boomer dad's expectations.

A TikTok video posted by @carrerasfam is going viral, with over 300,000 views, because so many millennial parents can relate. In the video, a husband politely but firmly tells his “practically retired” baby boomer dad that he’s not taking his 3 young kids on a 400-mile drive to their house for the holidays.

Carerras Fam is a popular TikTok page about “all things postpartum and mamahood.” The husband opens the conversation with his dad by explaining all the inconveniences of taking 3 young kids on a long road trip. “I know you want us to drive down for the holidays, but it's kinda ridiculous that you want me to pack my 3 kids with their portable beds with my clothes, their clothes, the formula, everything that goes on with raising 3 kids and having them feel comfortable. Drive down for over four hours just so that we could spend some time in your house?” the husband says.

@carrerasfam

Sorry it’s just so much work. But you’re welcome to visit us #millennial #millennials #parents #parenting #parentsontiktok #boomers #millennials

It’s obviously inconvenient for the couple to pack up their kids and drive 4 hours, but it’s also unsafe because the house is not baby-proof. "I'm gonna have to run around, make sure that they don't break any of your stuff, and which you will take care of them,” the husband continues using sarcastic air quotes.

The dad brings up another great point: His parents are in good health, so why don’t they drive to their house? “You could visit. You don't have little kids,” the dad continues. “You don't have anything going on.

"Why is it that every time I have to make the effort for you, yet you can't do the most basic thing for me?”

It’s clear from the phone call the dad understands that traveling with the kids and staying in a house that isn’t correctly set up for young kids will make the holiday a struggle. Instead of making memories, they’ll most likely be running around bent over trying to save their kids from breaking something or hanging out at Target buying electrical socket plugs and a bottle brush because they left theirs at home.



The video struck a chord with many millennial parents.

“First holiday with a kid… parents are confused why I won’t drive 9 hours with a 3mnth old for Christmas,” too_many_catz writes. “The ‘not baby proofed’ part hit my soullllllll. It’s so stressful having to chase your kids around and ask to close doors, move pictures, block stairs, etc. And nobody takes you seriously!" OhHeyItsIndy added.

It’s also expensive for young families to travel. “Add to it they want us to spend money on gas, airfare, etc. when we live paycheck to paycheck and rent while they own homes and live comfortably off a pension,” another user wrote.

This one hit hard: “They always act like you're asking the world of them, yet they will willingly go on any other vacation that they choose,” Mackenzie Byrne wrote.

TX Travel Chick may have hit the nail on the head with her explanation for why boomer parents expect their children to road trip it to their house for the holidays. “Because we are used to following their orders!!! REVOLT,” she wrote.

Ultimately, it would be interesting to learn why boomer parents want to inconvenience their kids when it would be much easier for them to take a trip to see them, especially if they can afford a hotel. One wonders if they are being entitled or if they’ve forgotten how hard it is to travel with young kids.

Photo by Andre Taissin on Unsplash

People share out-of-touch money advice.

People have all sorts of advice on saving, and when doling it out, money experts often overlook those living paycheck to paycheck. I saw one of these experts on television recently saying people should have three separate savings accounts for their home expenses—one each for appliances, furniture and home repairs. These in addition to your emergency savings fund and likely your regular savings account. The advice, while acceptable for some, is comical for the rest of us. For even more hilarious money advice, people on Reddit came up with some doozies.

Reddit user u/Salazard260 posed the question "What's the most comically out of touch 'advice' you've been given by someone wealthier?" Most of the responses were eyebrow-raising, and if you've ever been poor—whether it be working poor or below poverty line poor—the advice was hilarious. User blezmalfoy said they were told, "That I need to buy several apartments and rent them out. Unfortunately, he did not tell me where to get money to buy several apartments." You do have to wonder, where does one simply get money to buy multiple apartments? Maybe the money tree our parents told us didn't exist is actually in a forest of other money trees and we just don't know it.

Remember the controversy several years ago when a financial advisor told millennials to stop buying coffees and avocado toast in order to afford purchasing a home? This approach may work for some people who might save a couple hundred dollars by the end of the year, but it's hardly enough to make a downpayment on a new house. It makes you wonder how much this person thinks lattes cost.

Screenshot from Reddit

The Lending Club reported that in June 2022, 61% of Americans were living paycheck to paycheck, and the Census Bureau states that 11.4% of Americans were living in poverty in 2020. People in these two categories don't have any room to save for a rainy day when they're focused on surviving until payday, so the advice given from people far removed from the poverty line can seem a little tone deaf.

In the Reddit thread, a commenter explained advice given to them when they complained of gas prices. "If you think gas is too expensive, just buy an electric car." They lamented, "If I'm unable to pay $50 for a tank of gas, I'm certainly not going to be able to buy a new car, whether it's electric or not."

Another user was told, "Start putting money away for retirement now asap!!" To which the commenter responded, "my brother in christ i cant even put money away for Christmas presents."

Screenshot from Reddit

The one that takes the cake is a commenter who revealed his college roommate said, “When your parents send you your allowance each month, just set a thousand aside each time.” I bet this commenter never thought to do that. Also, how much are wealthy people sending their kids to college with? The way prices are right now, my children will be sent off to college with a box of ramen and a crisp $5 bill.

The thread is full of real-life experience and responses that will make you chuckle, especially if you grew up less wealthy or are currently poor. Starting a business and buying rental property costs money, as does paying off all of your debt to free up money to save. It would seem that most people understand that concept and yet it appears to be lost if you're reading the encounters on Reddit.

Just know, if you truly want to save money, quit your job and take a six-month sabbatical to wait for the perfect idea to come to you. I'm kidding. Don't do that.


This article originally appeared two years ago.

Joy

They thought their son lived an isolated life. But when he died, friends showed up in droves.

Mats Steen's parents were shocked to learn their severely disabled son had lived a rich, independent life they knew nothing about.

Mats Steen lived a secret life that his family only discovered after he died.

Mats Steen was only 25 years old when he passed away, his body succumbing to the genetic disease that had slowly taken his mobility since childhood. He'd lived in a wheelchair since his early teens, and by his 20s, his physical abilities had deteriorated to the point of only being able to move his fingers. He could push buttons and use a mouse, and he spent nearly all of his waking hours playing video games in his parents' basement.

His family loved him and cared for him through it all, giving him as much of a normal life as they could. But they also lamented everything they knew he'd missed out on. "Our deepest sorrow lay in the fact that he would never experience friendships, love, or to make a difference in people's lives," Mats' father shares.

Mats left behind the password to a blog he kept. Not knowing if anyone would actually read it, his parents published the news of Mats' passing in a blog post, adding their email address in case anyone wanted to reach out.

Much to their surprise, messages began pouring in from around the world—not just with condolences, but with heartfelt stories from people who called Mats their friend.

The Steens soon discovered that their son had lived a much fuller life than they'd ever imagined—one that included all the things they always wished for him.

As his online life was revealed, the family learned that Mats began his days with a routine 30-minute sprint through the forest. He frequented cafes and pubs, chatting with strangers and flirting with women. He sat by campfires having heart-to-heart conversations. He made friends and enemies. He fought heroic battles. He supported people in times of need. He gave advice that people took. He experienced his first kiss.

And he did it all as "Ibelin," his handsome, muscular avatar in the online game World of Warcraft.

- YouTubewww.youtube.com

Mats' life is showcased in the documentary, "The Remarkable Life of Ibelin," in which his parents share the story of how they discovered their son's group of friends they didn't know he had.

People who've never played an open world roleplay game like World of Warcraft may wonder how real community can be built through it, but Mats' story proves it's possible. The friends he made through the game have shared the real influence he'd had on their real lives, from helping them with problems they were facing to empowering them to make positive changes in their relationships.

Though he never met them face-to-face, Mats' online friends say he made a significant impact on them.

A young woman Ibelin had connected with as a teenager—the one with whom he'd shared that first virtual kiss—shared that her parents had taken away her computer when they feared gaming was interfering with her studies. When she logged on at a local library, Mats gave her a letter he had written to give to her parents, encouraging them to talk with her about her gaming hobby and to work out a solution together that didn't require her to give it up completely. She printed it and gave it to them. Miraculously, it worked.

Another woman had been having a hard time connecting with her autistic son as a young adult. When she talked with Ibelin about her struggles, he suggested that she and her son start gaming together and connect in that way first. Eventually, that connection via the virtual world led to warmer in-person interactions between them—and a life-changing shift in their relationship.

"I don't think he was aware of the impact that he had done to a lot of people," the mother shared.

Mats interacted with the same online friends as Ibelin for years, going through the kinds of ups and downs all real friendships experience. He kept his physical condition a secret until close to the end of his life, when he finally opened up to another player who convinced him to share his reality with the others. Some traveled from other countries to attend his funeral, with one of them speaking on the group's behalf and a few of them serving as pallbearers. Those who knew Ibelin also held a memorial in-game at his virtual gravesite—a tradition that has spread beyond just his own guild.

Typically, we think of someone escaping the real world and spending hours a day playing video games as unhealthy, but for Mats, it was a lifeline. As Ibelin, Mats was able to have a level of independence and a rich social life that simply wasn't possible for him in the offline world—an uniquely modern phenomenon that technology and human creativity have made possible.

Mats' impact on his online community was real, and 10 years after his passing his impact is spreading even further.

Duchenne muscular dystrophy, the genetic disease that Mats lived with and ultimately died from, affects 300,000 boys worldwide. It only affects males and it has no cure. But CureDuchenne, a global nonprofit dedicated to funding and finding a cure, has partnered with Blizzard and World of Warcraft in Mats' honor. From now until January 7, 2025, World of Warcraft players can purchase a limited-edition pet fox named Reven ("fox" in Norwegian). The Reven Pack, which includes a transmog backpack and Reven’s Comfy Carrier, costs $20, with 100% of the purchase price being donated to CureDuchenne.

The Reven Pack on World of Warcraft—100% of purchase cost goes to the CureDuchenne foundation.World of Warcraft/CureDuchenne

“Mats Steen lived a life in World of Warcraft that he couldn’t in the real world as he fought Duchenne muscular dystrophy alongside his incredible family, who I’m proud to have met and fallen in love with,”said Holly Longdale, executive producer of World of Warcraft. “Working with CureDuchenne for our Charity Pet Program, in honor of Mats’ memory, allows us to harness the power of our phenomenal global community to bring meaningful impact to so many lives.”

You can learn more about Mats' story in the award-winning documentary, "The Remarkable Life of Ibelin," on Netflix and learn more about the CureDuchenne fundraising initiative with World of Warcraft here.

Kim Press drops free art in random places for unsuspecting wanderers to find.

Imagine you're hiking out in the red rocks of Moab, Utah, or taking a stroll down the beach in Key West, Florida, when you come across a gorgeous piece of glazed pottery. No one is around, just a beautiful, hand-carved bowl sitting with an envelope next to it that reads:

FREE ART

This bowl was left here for someone to find and keep. If it doesn't speak to you, leave it for someone else to find, or take it and give it to a friend. I only ask that it be enjoyed, and if you like, you can let me know where it ends up. (Contact details inside.)

Love, Kim

Kim Press is an artist from Texas who shares her pieces under the name Sailing Adrift Studios. When she travels, she takes a piece with her to leave for a random, unsuspecting person to find. Lucky wanderers in 36 states and two countries have come across Press' pottery "free art drops" and gotten to take home an unexpected artistic treasure from their own travels.

And these aren't any old bowls. Check out how absolutely stunning these pieces are:

Press recently shared a video highlighting some of the pieces she's dropped, and every single one of them would be an incredible gift.

"To say that I am proud of these numbers is an understatement," she wrote. "In my wildest dreams, I could never imagine how much taking a pottery class and playing in mud would change my life…. And it just goes to show that if you travel far enough, eventually you will find yourself."

People who find Press' pottery let her know where the pieces ended up, and half the fun of it is seeing how far they travel. She put a page on her website where she shares the pieces' "found" stories, such as the bowl she left in Santa Monica, California, making its home in Spain, a bowl she left in Tucson finding its way to China and a piece found in Pennsylvania ending up in Mexico. Sometimes she leaves them in hiking spots in the wilderness. Sometimes she drops them in the middle of a city. Some pieces have stayed in the states she dropped them and others have traveled across the country or the world.

People who have found them have shared how much joy their discovery brought them:

"Just wanted to drop you a note to say that I picked up your 'Free Art' in the park in Fairhope during my last day of my Snowbird stay (January and February) in Orange Beach. While I was in Orange Beach, a dear friend fell and broke her hip and I wanted to get her something to take back. When I say your beautiful bowl, I knew it would touch her heart. Thank you so much for your generosity. She absolutely loved it."


"Dear Kim , Today I found a wonderful surprise, we were at Ft. Zach for my grandson's 5th birthday party and found this on our table, my first thought was ..why is this here? Then I read the card and was speechless... How incredibly lucky I am to have such a precious gift. You are an amazing , talented person. Thank you so much , this will be something I will pass on to my grandchildren. I wish you nothing but the best!"

"Found this incredible gem today. It makes me happy how people are so passionate about their gifts and talents that they would want to share it with the world. Thank you."

Some people have even started looking for the pieces when Press does an art drop announcement, alerting friends and family if the drop is near where they live. A woman who found a bowl in Boise, Idaho, wrote:

"My friend follows you and today she shared your profile with our friend group. We all followed your page and on my way home from work she called me and sent me on an adventure. I squealed when I found it. Thank you so much!! Keep on keeping on."

And a group in Lago Vista, Texas, shared:

“Our out of state guests were about to do a polar plunge in our pool when they saw your post and decided to go art drop hunting instead... so exciting!!!”

Everyone who found pieces shared how much gratitude they felt upon finding them.

Check out the Sailing Adrift Studios website to see where Press has left her free art so far, and follow her on Facebook and Instagram to see where the next art drop happens.

Thank you, Kim Press, for bringing joy not only to the people who happen upon your artwork, but also to those of us living vicariously through them. (I really need one of those bowls!)


This article originally appeared two years ago.

Canva

Emetophobia is a pathological fear of vomiting and can be incredibly debilitating.

Something was wrong with our daughter. We'd seen the signs brewing for a while, but couldn't pinpoint their exact nature. She'd always been an easy-going kid, but sometimes she'd flat-out refuse to do certain things or go certain places, and she would panic if we tried to coax her.

She had frequent dizzy spells and stomachaches with no apparent physical cause. If she heard someone we knew was sick, she'd immediately ask with a worried tone, "What kind of sick?" Those last two things should have been bigger clues, but we didn't have the clarity of hindsight. And as adolescence approached, she started experiencing more anxiety in general. She would back out of plans with friends more frequently.

She spent more and more time in her bedroom. When I took her to orchestra practice—something she enjoyed—she couldn't make herself get out of the car to go in. We could see her trying to do things, but more and more she was paralyzed by a fear she couldn't name. It was clear she was struggling with anxiety and we tried a couple of different therapists. They each helped a little, at least to keep the spiral from getting worse. But we seemed to be missing something.

It began dawning on me how often she talked about feeling nauseous. I took note of how many times she'd ask us if food was OK to eat and how frequently she'd refuse to eat certain things. She obsessively checked every bite of meat to make sure it looked cooked enough, and if her stomach felt the slightest bit off, she wouldn't eat at all. If a character in a movie or TV show gave any indication that they were about to vomit, she'd hop up and leave the room. If she found out someone had a stomach bug, she'd hole herself up in her bedroom. And so we started piecing it together.

"I've noticed that most of your anxiety seems to be centered around you worrying about throwing up," I said to her one day. "Does that sound accurate?" She flinched when I said, "throwing up," but nodded "yes."

As a shot in the dark, I googled "intense fear of throwing up," and found the clinical term that would change everything: emetophobia.

Emetophobia (also called specific phobia of vomiting, or SPOV) is a pathological fear of throwing up. In scientific literature, it is often referred to as an "understudied" or "underresearched" disorder, but there is a growing consensus that it is surprisingly common. One study found that up to 3% of men and 7% of women are affected by it. No one loves throwing up, of course, but when it becomes an actual phobia it can be incredibly debilitating.

For our daughter and other emetophobes, throwing up is the most terrifying thing that could happen to them. My daughter has said if she were given the choice between throwing up and dying, she's not sure which she'd choose. Totally irrational, but that's what makes it a disorder. Sometimes emetophobia is a PTSD response to a traumatic vomiting episode, but often—as in our daughter's case—there's no clear cause. But the why is less important than the what and the how to treat it.

People with emetophobia are basically afraid of their own bodies. Many phobias are situational—people don't generally freak out about heights or spiders or small spaces unless they're in or around those situations—but a person can't avoid or escape their own body. There are no breaks, no periods of relief from the fear. And the biggest triggers for emetophobia—food and other people—are also unavoidable, which makes it a particularly challenging disorder.

We all know that anything we eat has the possibility of giving us food poisoning—we know it's rare, so we take reasonable precautions and don't worry about it. Emetophobes do worry about it. All the time. They check expiration dates obsessively. They ask for reassurance that food is safe to eat. (I can't count how many times our daughter has asked us to smell or taste something that is not the least bit old.) Obviously, they can't not eat, but they often start limiting their diets to things they deem "safe."

Additionally, in an emetophobe's brain, pretty much every normal stomach sensation—hunger, digestion, gas—gets interpreted as nausea. And if they think they're nauseous, they won't eat. Such disordered eating can easily be misdiagnosed as anorexia nervosa, though it's a totally different illness.

People are another big trigger. Any person we interact with could have a stomach bug and not know it yet, which they could pass along to us. Again, we all know this, but we understand the chance is small, so we don't worry about it. Emetophobes do worry about it, incessantly, to the point of avoiding people and places where people will be, which is basically everywhere except their own personal living space. Hence the spiral into reclusiveness, which can easily be mistaken for agoraphobia.

The compulsive food checking, the frequent hand washing and the avoidance of certain things that go along with emetophobia also look a lot like OCD. (And indeed, as my daughter's therapist explained, emetophobia is a form of obsession.) All of these things make diagnosis tricky, especially since emetophobes won't usually walk into a therapist's office and say, "Hey, I'm deathly afraid of throwing up." They often avoid all words related to vomit and won't talk about it, so they speak in vague terms about their fear, which can lead to an initial diagnosis of generalized anxiety.

Getting the correct diagnosis is vital, however, to getting the right kind of treatment.

Before we found a therapist who knew how to treat emetophobia, we utilized a website called emetophobiahelp.org. It's run by therapist Anna Christie, who suffered from emetophobia herself, and it's an excellent starting place for self-help.

One of the first things the website suggested was to have my daughter look at this:

V * * * *

Not the word "vomit," just the first letter with the rest of the letters as stars. That's how avoidant many emetophobes are about anything involving the idea of throwing up. We added one letter at a time—just looking at them, not even saying the word—until she worked up to reading the whole word, then saying it out loud until she could do it with minimal discomfort, then saying synonyms—puke, barf, upchuck, and so on. The day my daughter could say "vomit" and "puke" without hesitation was a huge milestone.

Incremental exposure like that, eventually leading up to watching videos of people vomiting and pretending to throw up yourself, is one part of treatment. (Successful treatment doesn't require actually throwing up, by the way. Nor is vomiting a cure for the phobia. It's common for people to think, "Oh, if they just throw up and see it's not that bad, then they'll get over it," but that's not how it works. Generally speaking, an emetophobe vomiting without undergoing the mental changes needed to process it will not resolve the phobia.)

The other part of treatment is cognitive behavioral therapy (CBT). This is the retraining of the brain to manage the fearful thoughts. There are various elements of this part of treatment, including learning how the amygdala—the fear center in your brain—works and how to purposefully interact with it. Through various thought-feeling-behavior exercises, you learn how to diffuse the fear and stop inadvertently reinforcing it. (There's some evidence that EMDR can also be helpful for people with emetophobia.)

As her parents, we had to learn how the behaviors we thought were helping our daughter actually weren't. Telling her over and over again that food was fine seemed like the logical counter to her repeated requests for reassurance, but really, we were reinforcing her need for reassurance, which then reinforced the anxiety. We had to learn to tell her once, and only once, that something smelled or tasted fine and then stop responding. We had become avoidant of talking about vomit in front of her because it seemed so traumatizing—that wasn't helpful either.

So much of what we've learned in treating emetophobia is counterintuitive. That's true of treating most anxiety disorders, but with emetophobia, the behaviors are so specific it's important to find a therapist who understands how to treat it. It also can be hard to find a therapist who is familiar with it. Most we have called have never heard of it or never treated it.

Anna Christie's website is a good place to start your search. It has a list of therapists who specialize in treating emetophobia. She also has recommendations for finding a therapist if there aren't any on her list near you. We're in a rough time for finding therapists right now, though, as so many are booked out for months and aren't accepting new patients.

For self-help, an incredibly helpful book also came out last year. It has been a lifeline for my daughter, as her therapist moved out of state and we have struggled to find another to complete her treatment. "The Emetophobia Manual" by Ken Goodman, L.C.S.W. is basically a whole course of therapy in book form, complete with exercises and exposures. It's so good, I can't recommend it highly enough.

The good news is, emetophobia is treatable and there are more and more resources available for people who suffer from it. But it starts with getting the correct diagnosis, which is often the hardest part of the process.


This article originally appeared two years ago.