Welcome to Munchausen’s syndrome in real life
Photographee.eu | Adobe Stock
Growing up, words like “truth” and “reality” were loosely defined in my family. For as long as I can remember, my grandmother (mom’s mom) was blind. She walked with a retractable cane. She read braille and ordered books on tape. Grandma used to have this silver cube that looked like a wireless speaker, and when you pressed the button, a booming electric voice told you the time.
For a brief time during childhood, I loved going over to grandma’s apartment. I’d run my fingers over her braille books, and play with her collection of miniature knick knacks on the wall, like tiny Coca-Cola bottles and Sprite cups which would have been perfect for a little dollhouse.
In many ways, Grandma’s apartment felt frozen in time. Walking into that little space was comforting because it smelled so musty and warm. Blue mohair yarn sat in a basket in one corner while fake autumnal flowers cheered up the white walls.
I’d spend hours pouring over old photographs, plus Mickey Mouse sketches from her brother Dwight. He’d worked on Fantasia, and gave his sister many sketches but she lost most of them over the years. The few that remained were poorly preserved though greatly loved. Like this little bit of history that told us our family wasn’t just a bunch of “good for nothing” losers.
We grew up very poor, and mom had no qualms about telling us from a very young age how she’d been picked on in school. Her teachers called her “welfare trash,” right in front of her classmates. Mom insisted the same thing would happen to us if we ever let anyone know we lived off government aid.
Life with mom was always so serious — everything a matter of life and death. Somehow, that made grandma’s place feel something like a sanctuary. She had a railroad pension and a bit more financial breathing room. Grandma ordered special groceries from Schwan’s delivery, and often had my favorite mandarin orange segments or spiced apple rings.
While I was still very small, Grandma doted on me, and spending time with her felt like a very good thing.
There were shadows, however. Signs that our family life wasn’t so good. Mom would coach us before visiting Grandma, letting me and my sister know what we should or shouldn’t say. Often, we were supposed to conceal the fact that we’d gone anywhere or done anything without her.
We were also instructed not to say anything about the fact that we knew that Grandma wasn’t really blind.
While everyone knew our grandmother as a blind woman, we knew it was all for show.
It was a very strange life for any child, I think. To see our grandmother take up blindness like a hobby. The years passed and her little apartment filled up with new tools for the visually impaired, but all the while, we knew the truth.
Grandma only pretended to be blind.
She was never able to tell us how she went blind. And her experience of blindness changed from day to day. Sometimes, Grandma claimed total blindness, as in no light, form, or color. At other times, she stressed that she was “legally” blind, and could see well enough to interact with her granddaughters and tell us that our dresses were cute, or see when her bus was coming from two blocks away.
One day, she picked up my mom’s new prescription glasses, and declared they helped her see better at home. Our mom hated the frames and Coke bottle lenses, so she let Grandma keep them. But of course, when we went out in public, she went back to her dark sunglasses.
It’s a very strange thing to be in on a family secret. When we went to church, she’d put feigning blindness on full display. Grasping arms, pretending she couldn’t find a door handle. Folks came to her side and Grandma was the most in her element whenever she was the center of attention.
In hindsight, it’s unfortunate that my mom encouraged us all to keep up the charade. Mom used to talk to me and my sister a lot about Grandma’s issues. She explained how when she and her siblings were still in high school, her mom pretended to have a bad heart. Grandma spent my mom’s senior year on “her deathbed,” and the lie grew so large there were even foster parents involved.
I was still in grade school when my mom first described to me the betrayal she felt when she realized that Grandma was faking her illness. According to my mom, Grandma learned early on that she enjoyed the attention that came from falling ill. It first happened when she was a young girl who survived polio. Even after she was recovered, she craved the payout she got for remaining ill and cooped up at home.
That’s how I first learned that my grandmother couldn’t be trusted. From my mom. Yet she still had me and my sister play along.
And by the time I was in third grade, Grandma wasn’t only “blind.”
She said she was paralyzed too.
It was my mom who first requested a wheelchair for Grandma. It seemed like an innocent idea. Grandma had arthritis, and seemed to have an increasingly hard time walking when we went out and about with her. My mom mistakingly thought a wheelchair would help move things along.
As it turns out, our grandma wasn’t having mobility issues. She was simply wearing shoes that were too small for her feet, and her toe nails needed to be trimmed. Unfortunately, her physician was an elderly man who caved into his patients’ (and their families’) desires, so he approved the request for a wheelchair with no questions asked, and Medicaid delivered.
Within weeks of getting her no-frills manual wheelchair, Grandma quit walking on her own in front of the rest of us. I often attended church with her — at this very pentecostal messianic Jewish congregation. Everybody was speaking in tongues and praying for her healing.
“I… just… can’t… do it,” she’d say painfully. Lots of moaning and sighing. Sometimes tears. “Oh, how I wish I could walk again!”
She assured everyone that she was praying for a miracle.
I spent my tween and teen years watching Grandma play pretend. I felt equally mortified by her behavior and ashamed of my own embarrassment. Do people really think she’s an invalid, I wondered. It was tough for me to understand, but it seemed like everybody fell for it.
While they were all praying for a miracle at church, I still got to visit her in her apartment. When we knocked on her door, we could hear her scrambling around her place trying to get to her wheelchair. My mother, my sister, and I all knew that she hadn’t suddenly become paralyzed. We knew that she could still walk, but Grandma was once again, most in her element as the long-suffering patient.
The attention she got from being an invalid seemed to be her most cherished possession. So, we weren’t allowed to confront the elephant in the room, just talk about it when we got home.
Grandma never could explain why she needed a wheelchair. Sometimes, she claimed it was from having polio as a child. While it’s true some folks do get post-polio syndrome later in life, Grandma couldn’t seem to stick to that story. When asked what happened, she’d often trail off into the “unknowns,” claiming the doctors had never seen such a bad case before. Case of what? Polio, arthritis, side effects from medication? Her answers changed, but nobody called her out on those changes.
“She’s such a sweet old woman,” they’d say. “I hope your grandmother gets the miracle we’re praying for.”
Little did they know, Grandma wasn’t looking for a miracle. She liked playing ill. She never once gave up her act of blindness or paralysis — not even to feign a great healing. Instead, she dug her heels in deeper, eventually requesting a motorized scooter.
If I thought my grandmother’s earlier behavior was embarrassing, I was ill-prepared for what would come next. You know how the commercials for electric wheelchairs often feature happy, friendly, and I dunno, patient grandparents? That was not my grandmother. When she got into her motorized wheelchair, her attitude mostly said “get out of my way.” Sure, there was a dash of, “look at me, the poor and long suffering old woman.” But she was largely unapologetic for bumping into people or running over their toes.
It was as if the whole world needed to get out of her way. Like she expected everyone to see and revere her. By the time I was in high school, I dreaded going shopping with her. I’d spend the entire trip being hyper vigilant to avoid an accident in the store. Or to make sure she ran over my feet before anyone else’s.
Grandma had built herself a strange story of irresponsibility. Since she claimed she couldn’t see or walk, she always had an excuse for running into someone. “What? I didn’t see anyone!”
Ironically, she had little problem finding whatever she needed in any store. The woman who used braille at home could also keep up with prices and labels, not to mention the changing floorplan and display at each place.
It wouldn’t have made much sense unless you were close to the situation, and of course, the only folks close enough to see it were me, my sister, and my mom.
I spent my early twenties away from Grandma due to college and my brief marriage. After my divorce, I began to spend a lot of time with my mom and grandmother again. My mom complained to me that Grandma had gotten into the habit of “making herself sick,” especially on the weekends. She’d sit in her wheelchair and refuse to do anything about the swelling in her legs until they burst with leaking wounds. The wounds would get infected and she would be hospitalized, then brought to a nursing home to recuperate— Grandma kept repeating the same dang cycle. It was maddening for my mom to deal with since she frequently had to travel across town on a bus to visit her mom in a new nursing home.
Eventually, Grandma developed a nasty case of c. diff colitis, that kept coming back. When I was 25, she was admitted to the county hospital again, and for the first time, she had doctors who found her medical records questionable. Two doctors asked to meet with me and my mother in a conference room.
“There are a few puzzles in her history that we haven’t been able to figure out,” one doctor began. “Why is she in a wheelchair? What put her there? And how did she lose her sight? None of this makes sense.”
My mom explained that she’d long regretted ever getting Grandma a wheelchair. She also came clean about her history of pretending to be ill.
“I didn’t know it was going to start this huge thing,” she said. “But she loves being an invalid. She takes pictures of her chair and decorates it for Christmas.”
The doctors spoke with us for over an hour about Grandma’s medical history. Then the second doctor finally said it out loud. “This seems like a case of munchausen’s syndrome. It might make more sense to move her to the psychiatric ward.”
In the end, Grandma wasn’t moved to the psych ward, but once her infection cleared up, her doctors recommended a surgery to clean up some lumbar spinal stenosis. It seemed like a strange move for an elderly patient, but they wanted to get her walking again and thought that surgery would achieve the goal better than pain relievers and prolonged sitting.
The most surprising thing to me in all of this was just how mean Grandma had gotten. It was clear that she didn’t like being questioned about her health history. She also didn’t seem to think any of the nurses or cleaning crew members were worthy of her respect.
I found myself so appalled that I eventually had to speak up. “Grandma!” I’d whisper. “You can’t talk to people that way.” She’d glare at me and insist she’d done nothing wrong.
My mom started to get on my case about needing to be nicer to grandma. “Just because she’s nearly 80 years old, that doesn’t give her the right to treat people like slaves,” I answered.
And her attitude had cost her. My grandma lost her church friends as a few people finally began to question her health symptoms and she grew angry in return. When the tables turned out of her favor, she became a recluse and quit attending church altogether.
My mother and I both came into the hospital when it was time for her spine surgery. The anesthesiologist walked in and immediately said to her, “I thought you were blind.”
Grandma snapped back that she was blind but he just looked at her like she was crazy. “But you looked right at me when I stepped into the room,” he insisted. “You gave me eye contact and everything.”
“Oh, shut up,” Grandma growled.
I felt my face burn red because I’d been telling her all week to quit telling the staff to shut up. I felt like a broken record telling my grandmother once again that it’s inappropriate to tell others to shut up, even when their questions make you uncomfortable.
Of course, the reality was that I wanted to know the answers to the questions just as much as the hospital staff. Well, even more. I spent so many years wondering why our family operated like it did and why we all had to keep up the charade.
I suppose I wanted to know what on earth she could say to make sense of it all. According to my mother, we couldn’t talk about it because it would start a huge fight with my grandma.
Why was a fight the worst possible thing?
We didn’t talk about it, and even the doctors who brought up munchausen’s had let it go. At that point, the consensus seemed to be that she was old and set in her ways. Oh well.
Grandma died in a nursing home when when she was 82, from complications to yet another leg infection. Her mean streak never did go away, and I never quit telling her when her behavior was inappropriate. It became our natural dynamic, and I found myself feeling relieved when she finally died. Relieved and guilty. How do you begin to describe love within a family that’s so dysfunctional?
I used to think that my grandmother suffered from munchausen’s syndrome because she valued attention above anything else. These days, I’m not so sure.
My own mother is in her late sixties, and I understand now that she’s been lying about suffering from a variety of illnesses since I was five years old too. She and her mother are surprisingly alike, even though their motives were perhaps different.
It’s worrisome, because Mom always told me and my sister about the trauma Grandma put her and her siblings through. How she pretended to be dying and it was just about the worst thing a mother could do to her children.
Why our mother did the same thing is something I may never really understand. I don’t think my mother lies for the “attention.” I think it’s more about shifting responsibility away from herself.
For as long as I can remember, she’s always had some mysterious set of symptoms that have prevented her from moving forward or doing anything with her life. She didn’t have to finish school, get a career, earn money, or even grow as a person. In her mind, there was always something standing in her way.
Maybe that’s how it was for our grandma too. Perhaps the attention was just a side effect after all. For all their differences, my grandmother and mom have lived the same life — clutching a Bible, traumatizing their children, but never lifting a finger to help themselves.
This is the legacy my family left me. Mental illness, manipulation, and learned helplessness.
But it won’t be the legacy I leave.