When my mom first started exhibiting signs of Alzheimer’s disease, I was often embarrassed and ashamed of her behavior. She would say or do things that seemed bizarre to other people. Even though in the back of my mind I knew there had to be something wrong with her, I was still embarrassed by many of her behaviors. I was even more embarrassed because I had no explanation for why she was acting the way she was acting. I thought that having a reason for her behavior would help, but nothing changed once she was actually diagnosed with Alzheimer’s. My mom continued to act strangely at times, but I never wanted to tell anyone that she had Alzheimer’s. I felt like no one would understand because my mom was so young. I felt like no one my age could relate because their parents were normal. And, I felt like talking about it would make people uncomfortable and drive them away. So, I remained embarrassed, ashamed, and silent.
I remember being at my wedding about a year after my mom was diagnosed. There were tons of family members there that she hadn’t seen in years and many of my friends that she had never met. My mom, who was always a social butterfly, was completely withdrawn from the large group of people. She danced by herself all night long, at the edge of the dance floor. She even put up a fight when my dad and other family members tried to get her to sit down and rest for a while. She was acting like a spoiled little brat. I was humiliated. I was so worried about what other people were thinking. I thought that everyone was staring at my mom all night, thinking that she was crazy. So much of the night was wasted because I couldn’t keep my eyes off my mom. I wasn’t able to enjoy the reception or celebrate this milestone with my own mother. To be brutally honest, I was just so embarrassed by her behavior that I wanted nothing to do with her. I hate myself for saying that, but it’s the truth.
It wasn’t until I felt like I could no longer hide or laugh off her behavior that I finally started telling people that my mom had Alzheimer’s. Everyone was very supportive and some people shared how they also had a family member who had suffered from Alzheimer’s. What?! Really?! You mean, I wasn’t the only one? Where had these people been all these years? Why didn’t I know about them? Why didn’t anyone talk about it? It dawned on me that they had most likely felt the same shame and embarrassment that I had felt all those years. Why were we all so ashamed and embarrassed? Why were we all so silent about a disease that was actually so prevalent?
I realized that the stigma of mental illness also applied to Alzheimer’s disease. We all felt the need to hide our loved one’s disease because we didn’t want people to look at them, or us, any differently. We didn’t want people to think they were crazy. We made excuses for their odd behavior and laughed it off whenever possible because we didn’t want anyone to know. Why? Because when someone tells you they have cancer, you look at them with pity. But when someone tells you they have dementia, you look at them with fear.
We fear what we don’t understand. We are afraid of the crazy woman who talks to herself at the bus stop. We’re afraid of the man who comes back to work after taking some time off because he tried to kill himself. We’re afraid of the kid who sits alone at the lunch table, rocking back and forth. And, we’re afraid of the woman who suddenly forgets your name even though she’s known you for years. We’re afraid because we don’t understand it. People don’t understand that you can’t walk off a mental illness any more than you can walk off a broken leg. People don’t know what to say to someone who wants to kill herself. It all makes them uncomfortable.
Imagine being Kate Spade, successful and wealthy, a wife and mother, and telling people that you were thinking about killing yourself. Imagine what people would say. Imagine the shame and embarrassment. People would have looked at her like she was crazy. No one would have believed that someone like her actually wanted to kill herself. They might have even said she was just being dramatic. No wonder she didn’t tell anyone.
Imagine being a tough and strong soldier, coming back from a deployment, and telling your wife that you’re depressed. Imagine putting that burden on the woman who held it all down while you were gone for a year. Imagine your own kids being afraid of you and people telling you to suck it up. No wonder they don’t tell anyone.
Imagine being the surgeon who has to tell his colleagues that he can’t operate anymore because he doesn’t remember what to do. Imagine being the professor who is struggling to give lectures because she can’t seem to remember the words for things. Imagine being the grandmother who has to tell her daughter that she doesn’t remember the names of her own grandchildren. We would look at all of these people like they’re crazy. No wonder they don’t tell anyone.
We treat people with a mental illness like they’re all insane. We don’t even try to understand it because it’s easier to just turn around and walk away. When someone has a broken leg, we take them to the hospital so they can fix it. But, what can we do for the person who has a broken mind? Most of us don’t know what to do or say, but we know we can’t fix it. For that reason, we don’t even try. The first step in ending the stigma is education. The more we know, the more likely we are to be understanding. That’s why I continue sharing my story. No matter how many people out there know about and understand Alzheimer’s, there are still plenty of people who don’t. There are still plenty of people who look at my mom like she’s crazy or won’t even look at her at all. I feel like it’s my job to help educate them. That way when they come across someone who looks lost and confused, wandering around a parking lot, they won’t just stare. They might think about my mom and offer the person some help.
People with a mental disease, disability, or illness are just people. You would never fear someone who is missing a part of their body, so why should you fear someone who is missing a part of their mind? Mental illness is not scary or weird and it doesn’t define a person. We should treat people with mental disabilities with the same respect as we treat people with physical disabilities. Yes, we’ve come a long way, but we can still do better. The only way to end the stigma is to start talking. So, if you have a story, share it. There are too many of us with stories to tell for anyone to ever feel alone.