‘Doctors Told Me I Was Dying’—22-Year-Old Woman Became Disabled Overnight

Most 20-somethings tend to brush off aches and pains as being mundane features of daily life and not something worth paying much attention to. Rarely does the odd bodily cramp transpire into something more sinister, but for Sydney Bennett, it did and it left her “disabled overnight”.

Bennett was 22 years old when she was diagnosed with functional neurological disorder (FND), which she describes as being a “debilitating but fortunately not terminal disability of the brain and nervous system”.

Bennett, who is based in Idaho, never expected the unusual pain that kept resurfacing in her body to be the result of a condition that she now has to live with for life. Three years on from the scan that determined her fate, the classical liberal arts student has taken the bombshell diagnosis in her stride.

She now wants to inspire others with disabilities through her social media content, to never feel ashamed about asking for help. The aspiring writer spoke with Newsweek about learning to live with FND and trying to help others online.

‘Doctors Told Me I Was Probably Dying’

Bennett had started experiencing “unexplained chronic pain” shortly before her marriage to high school sweetheart, Colton Bennett, who is now a member of the armed forces. The pair had met at a debate tournament in Western Washington—where her family had moved to from Hawaii in 2006—but got hitched five years later when she was 22.

“I received several diagnoses as the pain kept getting worse, but nothing seemed to fit and I had no answers,” Bennett, now 25, told Newsweek.

“Two weeks after me and my husband’s honeymoon, while we were driving back from a date night, my hands became paralyzed. We went to ER but they couldn’t find anything with the limited equipment they had, and they sent me home with my hands still paralyzed.”

“Over the course of the next two weeks, I lost the ability to walk, speak, taste, and feel sensation in my hands and legs. I started having seizures, hallucinations, and bouts of paralysis. Doctors told me that I was probably dying but they didn’t know why. One month later, I was diagnosed,” she added.

In a newly-viral video that had been shared to her Instagram account, @the.annegirl, Bennett talked of practically turning “disabled overnight”.

To make matters worse, her husband was deployed overseas just four months after her life-altering diagnosis, and Bennett had to learn how to navigate the condition on her own.

What Is Functional Neurological Disorder (FND)?

Bennett, who is now a mother-of-one, had never had “never heard of” FND before her shock diagnosis. She told Newsweek that the disease was introduced to her as being a “stress response to a buried unresolved trauma”, but she wasn’t convinced by the vague explainer that had been thinly pieced together.

“I went home and researched the condition on my own and found out that it is indeed real. While trauma can trigger symptomatic onset, it has never been proven to be the cause. The cause of FND is still unknown but the stigma of it being a psychological illness has been disproven,” Bennett, who is keen to pursue a master’s degree in creative writing, explained.

Double-board certified neurologist with Neurology Los Angeles, Dr Leon Barkodar, told Newsweek what FND is and why it strikes.

“Essentially, it’s a condition that causes neurological symptoms, like weakness, tremors, or seizures, but isn’t caused by damage to the nerves themselves,” Dr Barkodar said.

“It is not fully understood but common theories suggest that it may be due to having incorrect signals in your nervous system. Unlike traditional neurological disorders caused by structural damage like Multiple Sclerosis (MS), we think that FND disrupts how brain signals work.”

“Doctors aren’t exactly sure what causes FND, but stress and trauma can sometimes play a role. FND can be frustrating because the symptoms feel real, but there’s no underlying nerve damage to treat directly,” he added.

‘Pregnancy With FND Was Difficult’

The couple had always wanted to start a family, but when they welcomed their daughter Hadassah on January 10, they had to let go of the ideas they once held about how they’d parent their first child. While still adjusting to her condition, Bennett had to learn how to navigate pregnancy and motherhood with an FND diagnosis. For much of the first nine months, she felt like she was fighting an uphill battle.

“Pregnancy was difficult,” Bennett told Newsweek.

“I went from using a wheelchair maybe 70 percent of the time to using one 95 percent of the time. Any sort of physical or emotional stress can make my symptoms worse so pregnancy was essentially one long flare-up for me,” she continued.

Her labor was difficult too, with it lasting over 52 hours after she began to seize in between contractions. Fortunately, the period after Hadassah was born was “infinitely” more forgiving for Bennett than the nine months she spent carrying her.

“The sleep deprivation caused lots of symptom flare-ups at first, but then I went through a short stretch where my body was almost symptom-free,” she said.

“Sadly, it didn’t last long and now I’m pretty much back to my baseline, but I do feel really confident as a mom. Hadassah and I are figuring out a routine and I’m learning her needs,” she added.

The couple roped in the support of Bennett’s sister after giving birth, since the rest of her family lives over five hours away, and she eventually found a way to write for her college course while raising Hadassah.

Sharing Her FND Story Online

Bennett’s unique set of challenges has only served as more motivation for her to advocate for disabilities online and continue her education on campus. She recently took the bold decision to move to Idaho for another year of college, but this soon turned out to be another test of Bennett’s strength and courage. The arts student recalled the darkest moments she faced.

“I would leave class to have seizures on the floor of the school bathroom, and I’d fall many times in my apartment or get stuck—sometimes for hours—on the floor,” she said.

“When I fell, I would tie my bag with my school books to my leg and army crawl across the floor to my mattress, because I didn’t know when I’d be able to get up again and I needed to study.”

On a separate occasion, Bennett got stuck on the floor while Colton was out. To get herself back up she held Hadassah and used both her legs to scoot them across the floor to her swing. Once her daughter was strapped in, Bennett used her hands to transfer to the wheelchair.

Although she had the support of Colton and the virtual support of her wider family, Bennett soon found herself feeling more alone than ever before while at college.

The mother-of-one felt keen to meet other people living with FND, and so she took to Facebook and created the first rendition of her social media blog @the.annegirl, where she shares her unique health journey with others.

At first, her goal was to befriend other people with FND, but she now spends much of her time creating content that draws attention to the condition and combats outdated stigmas about people with physical disabilities.

“This illness is incredibly difficult, but I don’t want to give into despair. I started sharing my journey online to create a space where people could find support, comfort, cheerfulness, and confidence in their disability,” she explained.

While her sights are set on raising awareness about FND, Bennett is also keen to show the world that people who need one should never shy away from using a wheelchair for support.

Bennett, who herself repeatedly tried to convince her husband that she doesn’t need a wheelchair, “finally” got her first one in April 2022.

“You know what I realized? My wheelchair didn’t make me any sicker—I was already sick. My wheelchair made me better,” she shared in one of her viral social media posts.

The writer-in-training had relied on a cane before getting a wheelchair, but it did little to help her mobility and she felt “miserable” during that time.

“The truth is, I thought that getting a wheelchair was me admitting that I would never get better. I wasn’t ready to do that. I held out hope most of that year, until we tried my final round of physiotherapy and saw no improvement”.

She even cites “figuring out” how to use her wheelchair as being crucial to boosting her confidence in caring for Hadassah.

While she still lives with the symptoms she first noticed three years ago, Bennett now has the tools needed to help her live a fuller and more comfortable life.

“I still have those symptoms, but I have gotten much better at managing them with medication and my mobility aids. I use a wheelchair about 90 percent of the time now,” Bennett said.

The undergraduate, who lives with her husband and daughter Hadassah in Moscow, often wonders how she would have coped with her life-changing diagnosis if she’d continued to reject the offer of a wheelchair.

Although her husband has only been on one five-day-long trip since Hadassah was born, Bennett expects that their time apart will increase after his paternity leave ends.

She’s found a few ways to keep both herself and Hadassah safe and well when that time comes. Bennett rocks her baby to sleep to give herself time to write, she uses her sling and lap belt to help with holding her and moving them both around in her wheelchair. “I get a lot of cuddles that way,” the mom said.

Whenever she feels a seizure coming on, Bennett places Hadassah in a safe place and “rides it out”.

“I’ve had lots of practice navigating symptoms on my own, and we have friends across the street that are available if I need help when Colton is away. My disability has given me loads of practice with the harder parts of life—but I wasn’t prepared for the wonderful. Colton and I love Hadassah so much.”

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