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Laughing and crying. They’re two of our most personally revealing behaviors. Why? Because they let people around us know when we feel joy and when we feel pain.
What would happen if you lost the ability to control these behaviors? It might confuse people. It would almost certainly confuse you. Embarrassment. Hurt feelings.
Having that control is a critical part of how you experience emotions and how you communicate with other people. Losing that control happens with Pseduobulbar Affect (PBA), and it can be devastating.
PBA (also called emotional lability, labile affect, or emotional incontinence) is a neurologic disorder that is typically characterized by involuntary or uncontrollable episodes of crying or laughing. It’s referred to as a secondary disorder, because it’s caused by a primary neurological disease or injury.
In the video below, a man displays the uncontrollable laughter that can accompany one of these episodes.
Health Stories Project recently spoke with several people who have experienced PBA themselves or seen it in someone they care about: Multiple Sclerosis patients Diane and Jeff; Gloryann, whose husband suffered a stroke; and Barbara, who has PBA as a result of a traumatic brain injury.
Some people have lived with PBA most of their lives. Although she wasn’t diagnosed with Multiple Sclerosis (MS) until she was 41, Diane and her doctor traced many of her symptoms back to childhood. She recalls experiencing PBA intermittently as a teenager, usually uncontrollable crying, but the episodes didn’t start getting really bad until about three years ago.
“I can be out with friends, having a good time, and I just start crying,” she explains. For Diane, it’s important to let the people know about her condition and the symptoms so they don’t get the wrong impression.
“I’ve never hidden my MS from anybody close to me because I don’t want the stigma of them not knowing what’s going on with me.”
This is something that Jeff, a 52 year-old Ohio native, understands all too well.
“A friend of mine’s father passed away, who was also a fishing buddy of mine. When I went to give him my condolences at the funeral, I started laughing uncontrollably,” he recounts.
When Jeff later apologized to his friend and explained that it was a symptom of MS, which he was diagnosed with several years earlier, the friend assured him it was OK and that there were no hard feelings.
Unfortunately, he didn’t have the benefit of explaining his medical history to the rest of the mourners that day.
“That’s why you just don’t judge people until you know them,” he says. “I’m sure there were people who were judging me at that funeral.”
Sometimes it’s not that the behavior is inappropriate for the situation – it’s that it seems completely out of character for the person themselves.
Gloryann’s husband has suffered three strokes over the last twenty years. She describes the man she’s known for much of their relationship:
“My husband is very stoic. I’ve never seen him cry, except at his own mother and father’s funerals, and even then he barely cried.”
That was before his most recent stroke, though. She goes on:
“We live in a small house and one day I heard this uncontrollable crying. I walked into the living room and he was watching the movie ‘My Dog Skip.’ I cry at movies but he was just sobbing.”
It turns out the movie reminded Gloryann’s husband of a situation their son had gone through with their family dog and that was enough to trigger the emotional outburst.
“Now he won’t even watch something on TV if he thinks it might make him cry,” she says. “He’s very afraid of being out of control of his emotions.”
Jeff knows exactly what that’s like. “I can’t watch a lot of TV shows,” he explains. “Even ‘Little House on the Prairie.’ If something sad happens, I’ll just start weeping uncontrollably.”
For others, a specific trigger isn’t necessary. Linda has been living with MS for twenty years, and PBA has simply become a part of her routine.
“I cry every day no matter what, and I still don’t get it,” she says. “Sometimes I’ll start crying over breakfast, just for a few minutes and I don’t know why. It usually passes in a minute though.”
Barbara, who experiences PBA as a result of a traumatic brain injury she suffered several years ago, talks about how the severity of her symptoms has changed and what helps her manage them.
“It has gotten better over time. It still hits me, but I have a happy thought that kind of pulls me out of the crying part. The laughing is not too bad.”
Whether or not her own symptoms actually improve, Diane takes comfort in the timeless adage “this too shall pass,” and encourages other to do the same. “Just hang in there,” she throws in for good measure.
As someone who loves a person affected by PBA, Gloryann has another phrase she relies on: he can’t help it.
“It seems very simple, but it gets to the point. He does things all the time that seem off and I just have to keep reminding myself,” she says.
So what do people living with pseudobulbar affect really want from the people around them? Linda sums it up nicely:
“I want people to have compassion for me, but I don’t want them to pity me or treat me differently.”
Have you experienced Pseudobulbar Affect? Sign up to share your experiences with Health Stories Project!