Women share what it's like to have facial paralysis from Bell's palsy: 'This is not my face'
One morning this past June, writer Elena Sheppard woke up and thought, “Something feels weird on my face,” she tells Yahoo Life. “My lip felt swollen to me.”
It reminded her of how some women’s lips swell when they’re pregnant, and Sheppard was, after all, in her last week of pregnancy with twins. But around four or five hours later, she lost the ability to move part of her face. “It was basically a sudden collapse of the right side of my face,” which she says was “extremely painful.”
The 35-year-old Brooklyn resident adds: “I thought I was having a stroke.” So did her husband. Sheppard called her obstetrician, who “very quickly said it sounds like Bell’s palsy” — a condition also known as idiopathic facial paralysis, which affects about 40,000 people in the U.S. each year.
What causes Bell’s palsy?
Dr. Jason Nellis, an assistant professor of otolaryngology at Johns Hopkins Medicine and an expert in Bell’s palsy, tells Yahoo Life that the condition — which comes on suddenly — happens when the facial nerve that runs along the inner ear becomes inflamed, putting pressure on that nerve and resulting in facial paralysis.
Although the exact cause isn’t clear, viruses, such as herpes zoster (which causes chicken pox and shingles) and herpes simplex (which causes cold sores and genital herpes), may play a role. Nellis explains that these viruses can lie dormant and then somehow become triggered. “No one knows exactly,” he says. Nellis notes that Bell’s palsy is also more common in women who are pregnant, although the reason why isn’t clearly understood.
Getting a diagnosis was “comforting,” Sheppard says, but because Bell’s palsy symptoms can be similar to those of a stroke, she had to go to a triage center for an MRI, which ruled it out. She was then prescribed the typical treatment for Bell’s palsy — steroids and an antiviral medication. “One of the keys is early diagnosis and early treatment,” says Nellis. “If you can receive treatment within three days of onset, that has a better chance of meaningful recovery.”
Struggling with facial paralysis
Despite the medication, however, Sheppard struggled with eating and drinking in the beginning. “Drinking water — it dribbles out of your mouth,” she says. “While eating, I bite my tongue and cheeks a lot. It’s just like everything is in the wrong spot.”
But the biggest challenge has been dealing with her right eye, which still doesn’t close all the way. “I’ve had my eye open now since June,” she says, sharing that simple things like taking a shower and washing your face are tricky and uncomfortable when your eye doesn’t fully close. “Or when it’s windy out, your eyes squint to protect yourself but your eye doesn’t” with Bell’s palsy.
“It doesn’t feel normal,” says Sheppard, who uses eye drops during the day and an ointment in her eye at night to keep it moist.
Beyond the physical struggles, Sheppard wrestled with the fact that she couldn’t smile in any of the photos with her newborns. But, she says, being a new mom has also helped her cope with having Bell’s palsy. “In a weird way it’s kind of a blessing at this moment in time — I’m so busy with other things,” she says. “I think if I didn’t have two humans to keep alive right now, I’d be totally fixated on this and destroyed. But because I’m so busy, I do think about it but it’s not a preoccupation.”
When she does have time to think about it, though, “it gets me really sad,” she shares. At home, Sheppard says she’s in “this bubble,” but when she leaves the house to meet up with friends or run errands, “I see people looking at me and it’s, ‘Right, this is not my face.’”
Sheppard describes herself as “generally a very smiley person,” so it’s been “weird to try to figure out how to convey that without my face. I just can’t smile.”
Like Sheppard, registered dietitian Holley Grainger also experienced Bell’s palsy around her pregnancy. During the last six weeks of her second pregnancy in 2014, the Alabama resident was hit with “tremendous headaches” at the base of her skull on the right side.
“Six days after delivering my daughter, I went to whistle for the dogs and realized the right side of my lips couldn’t pucker to make a whistling noise,” Grainger tells Yahoo Life. “My eye was also droopy, and I had an intense pain where my cheekbone and ear meet on the right side. Throughout the day, my face had tingles, my eye was twitching and I had a headache.”
Within less than an hour of her symptoms starting, “the entire right side of my face was motionless, and I had an intense ringing in my ear.” Just like Sheppard, Grainger thought she was having a stroke. “We rushed to the emergency room for tests and I was told that I had Bell’s palsy,” she says, sharing that the whole experience was “extremely scary.”
Grainger says the ear pain and pain along her cheekbone where her facial nerve is located was “excruciating,” adding: “I had terrible headaches and my eyes were extremely dry because I couldn’t blink.”
She was put on “high doses” of steroids and antivirals and was told “to protect my eye by using thick eye drops and taping it shut at night,” she says. Along with the pain, Grainger had to come to terms with having her face look different from what she was used to. “Mentally, I had an extreme amount of guilt because I felt vain every time I looked in the mirror,” she says.
Coping with the unknown
But both Grainger and Sheppard say the “unknown” — not knowing how long symptoms would last — was and is one of the most challenging parts of having Bell’s palsy.
Nellis acknowledges that “the hard part is waiting.” He stresses that early treatment is essential for meaningful recovery. “As soon as you know you have facial weakness, get in to see a physician and get high-dose steroids and get a good course of treatment as soon as possible,” he says. “If you want to have the best chance of recovery, getting early treatment is going to give you the best bet.”
Grainger eventually recovered and says she was left with “very few side effects” that only she notices. Her advice for anyone who experiences Bell’s palsy? Find a specialist immediately — even if you have to travel to see them — “to be sure that you are taking the correct dosage of medicines because they are crucial during the first few days.”
Also, she says, find a support system. “Over the past seven years, I have had over 1,000 people email, call and comment with questions about Bell’s palsy,” Grainger shares. “However, the main comment I receive is how lonely and frustrating it can be. Not only does Bell’s palsy cause you to look different — which for many is devastating — but it is extremely painful and frustrating.”
Nellis agrees that seeking support is “really important,” pointing to his own research that shows people with Bell’s palsy have “higher rates of depression and anxiety and decreased quality of life.” That’s partly because people with the condition can become socially isolated. “They’re less likely to go out for dinner because they’re drooling,” he says, adding: “A lot of it is learning how to cope with a new normal. ... It’s really tough.”
As for Sheppard, her facial paralysis has started to improve, but she’s still experiencing symptoms. She says that she’s learned to take things one day at a time. “I have to take it day by day because there’s really no option,” she says.
Sheppard shares that she was “so worried” about photographs with her babies and not being able to smile in them. “But I’m happy for the moments I have now,” she says. “It’s not the picture I imagined, but it’s pictures of what actually happened, and that’s just as important.”
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