The Most Difficult Dementialand Post I Have Written to Date (aka What Dementia has in Common with Depression)

This was not the post I intended to publish this morning. In fact, I have a post written on police officers and how they work to help those with dementia…but that has to wait until next week.

My heart is somewhere else right now.

Wednesday there was a suicide on the college campus where I work as a professor. Her name was Katie, and I didn’t know her. In fact, this was her first semester here. Her peers and professors tell me she was well-liked and bright with a smile that lit up a room. She had plenty of friends and a supportive family. Yet, she struggled with depression and anxiety.

The more I hear about Katie, the more I relate to her. I even lived on the same residence hall floor where Katie lived and died. I’ve never been in a position where I considered taking my own life, but I was once a college student with clinical depression. I felt like a failure because, despite knowing I was loved and feeling like I had a bright future, I couldn’t find a way to get rid of a plague that kept me from being me. I lost a drastic amount of weight. I was exhausted but only slept a couple of hours a night. I just wanted to feel normal. I knew there was nothing in my life horrible enough to warrant how I felt, but I still couldn’t make myself feel better no matter what I tried.

This continued for three months before I marched myself to the student health center and said I thought I had depression. The nurse treated me with strikingly little compassion. Little did I know it was the beginning of a journey (still on-going) of working with health care providers with various levels of knowledge and kindness. I got through it, though, and very slowly things got better…until they got worse a couple of years later. I survived that, too, and I’ve survived a few more major depressive episodes since. I have no doubt it’ll happen again, and I’ll endure that as well.

Fifteen years later, I’ve finally come up with a way to describe depression…or at least my experiences with depression. It’s like getting a phone call with tragic news (like the death of someone you love or finding out a family member has cancer). Your stomach turns. A weight settles on your shoulders. You don’t know how you will cope with whatever news you’ve just been given. You don’t know what to do next. That’s what I feel like when I’m depressed–except there’s no tragic news. I walk around carrying that feelings for days or weeks at a time. It still happens, but it’s less scary than it was that first time. It’s less scary because I know that I won’t always feel that way. It can and will get better.

I’ve come to terms with taking anti-depressants for the rest of my life. They don’t cure depression, but I don’t know where I’d be without them. (And, yes, I am prepared for the onslaught of emails and comments I may receive about how I should stop taking anti-depressants and—insert your genius solution here—turn to God and more specifically YOUR church, eat more good fats, find a good chiropractor, etc.) I don’t think everyone should be on an anti-depressant. I think there are many people who will need them at certain points in their life but then be able to stop taking them. And then there are people like me…who may have to take them their entire life. Ten years ago my goal was to wean myself off anti-depressants. Now my goal is to be happy.

One of the most difficult aspects of being a person with depression is listening to other people make comments that imply you just aren’t trying hard enough to be happy, that you’re making a decision to be miserable, or that you just have a bad attitude. I have been told that I have no reason to be depressed and that there are lots of people worse off than me. People have said that I just need to think more positively. When I have been at my lowest, I have been told to cheer up. (Gosh! If only I had thought of that! How helpful!) It’s similar to telling someone with no legs to go run a 5k. Depression is an illness, not a choice.

A few years ago, I overheard a conversation at a nursing home that helped me relate to people with dementia on the basis of my own depression. A nurse asked a resident if she had eaten her evening snack yet. The resident said she didn’t remember. The nurse told the resident that she wasn’t supposed to give her more than one snack, so she’d have to think really hard to remember if she’d eaten her snack. The resident, understandably, got angry.

“Don’t you think I’d remember if I could?” she asked. “Do you think I’m just not trying?”

Not all people with dementia have that much insight, but she had a point. And I made a connection.

There are people who think having depression means you’re just not trying hard enough to be happy. There are also people who think having dementia means you’re just not trying hard enough to remember.

Physical illness and injuries are easier to understand–not just for those around us but for us. I’ve had kidney stones and knee surgery. I never felt betrayed by my kidneys or my left knee. I have felt betrayed by my brain when I’ve struggled with depression. While my kidneys and my knees are part of me, my brain is…me. I feel like my battle with depression is a battle against myself. And it’s hard to wrap my mind around that. How do you separate your illness from yourself when your illness is at the core of who you are (your thoughts, your emotion, your cognition)?

Someone with Alzheimer’s once told me that she felt like her brain was cheating on her. It was a traitor. She told me that she was trying so desperately hard to do everyday things–things that came easily to her in the past–and her brain just wasn’t on board. When she was trying harder than she ever had in her life, people around her were doubting she was trying at all. Her awareness of this made me particularly sad, but I am sure many people with dementia have similar feelings whether or not they are able to express them.

A few years ago, I had a college student who had been in Iraq. He came home with a brain injury that caused dementia-like symptoms as well as anxiety and depression. I tried my best to accommodate his desire to continue as a college student and finish his degree. One day in my office he made a comment about being jealous of veterans who came home with more “visible” injuries, like amputations. He told me that they were always being thanked for their service and called heroes. He felt he was just perceived as a slacker who had given up on life–when he was trying harder than he had ever tried before. For days, I thought about how ridiculous it seemed that a person would be jealous of someone who lost a limb at war, but I really did get it.

Physical injuries and illnesses are somehow more legitimate and heroic than health issues that we cannot see with our eyes. I’ve seen this phenomenon when people with dementia are humiliated for not remembering loved ones (“You know who that is, Grandma!”). We do a better job of being understanding when someone can’t walk than when they can’t remember. We can see their legs wasting away, but we can’t see that their brain showing signs of decay and shrinkage…even when that’s exactly what may be happening.

This post is a bit of a “coming out” for me. I’ve come a long way from being that depressed college student living on the 5th floor of Bender Hall. I still have depression. I’m not cured, and I’ve accepted that I never will be.

I hesitated to publish a post where talked about my own struggles with depression. In fact, I even sent a text to two friends last night who I knew would encourage me to go ahead and hit “publish” because I knew I needed the push.

I am ashamed to admit that I hesitated to publish this because of the stigma that surrounds mental health issues like depression. However, that’s not fair of me. It’s not fair of me to be “in the closet” about my depression when I continually applaud people with Alzheimer’s and other dementias for speaking out in a world that still stigmatizes dementia.

I can’t encourage people to speak out about dementia if I’m unwilling to speak out about depression.

Let’s get over the stigma.