“It’s just laughing and crying, it could be worse,” is usually the response I get when I explain pseudobulbar affect (PBA) to people who aren’t familiar with the condition. However, anyone living with PBA knows that it is so much more than that. It’s a medical condition that affects all aspects of your life, day in and day out.
I am raising two preteens. Trying not to laugh uncontrollably or cry out of frustration is a never-ending battle. Only those who have PBA can truly understand how debilitating it can be. Below are five mic drop responses for when others just don’t seem to get it.
1. “Don’t tell me just to stop laughing or crying.”
Hearing this often makes me laugh or cry even harder. These are emotions I can’t control. Believe me — if I could, I would put a stop to them. If my outbursts are making you feel uncomfortable, imagine how awful they make me feel. Telling me to stop makes it worse. I can’t turn it off.
2. “Please don’t tell me I’m drawing attention to myself — I know I am.”
I honestly can’t help it, and if I could crawl into a hole and hide, I would. Many times, I’ve been in a quiet public setting when my PBA comes on. I realize that everyone’s looking at me. But what am I supposed to do, disappear? I already feel enough shame.
3. “Don’t act like I’m crazy.”
When an episode starts, I try to go about my business as if everything is normal. You don’t need to draw attention to me or make a bigger deal out of it. Act as if this episode is nothing out of the ordinary. It’s what is best for everyone. When the episode passes, we can return to normal activities. If you make a big deal out of it, my PBA episode may last longer.
4. “I’m not drunk, people!”
If I’m out at a restaurant with my family, I’m probably drinking water. My redheaded goofball of a son is probably going to make me laugh, which will send me into a 15-minute fit of hysterics. Although I may ACT drunk, I am NOT drunk. People have often stared at me during these laughing fits, and I know they think I’m a terrible mother who is drunk in front of her kids. Don’t assume things about other people. You never really know what they’re going through.
5. “Don’t touch me. Give me space.”
This is probably the most important thing to do when a PBA episode strikes. I need time to cry and work it out on my own. I’ve got to do it myself. The worst thing for you to do is to touch or console me. I know it may seem like the right thing to do, but trying to comfort me will make it worse. Remember, there’s no way to stop a PBA episode, so you need to give me space to cry it out.
PBA can be very frustrating. It’s like I’m not in control of my feelings — they’re in control of me.
I may have several episodes a day, which is very exhausting. My family never knows how I’m going to react to a situation. Some triggers include being tired, overwhelmed, anxious, or irritated.
PBA is an invisible illness, and no one can see that I have it. However, I refuse to be invisible. I’ve become a PBA advocate to help educate others about this condition. I may have PBA, but it doesn’t define who I am.
Delanie Stephenson is a wife, mother of two, and stroke survivor from Wilsons, VA. Formerly a teacher, Delanie became a stroke advocate after her stroke and has written several articles on parenting after a stroke, young adults and stroke, and PBA. She’s written two books, “The Calm before the Storm” and “A Stroke Survivor’s Story.” She’s also written a children’s book called “Mom Had a Stroke.” She travels the country sharing her story to all that will listen.