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.

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

  1. Thank you for sharing! I’m proud of you. It takes a lot of courage to open up like you did. So many people, myself included, can relate to what you said (my experience with depression is very similar to yours).

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  2. Thank you for sharing! My daughter, who is a junior in high school, has been dealing with anxiety and depression for a little over a year now. It is extremely hard and frustrating for her. I plan on sharing your post with her. The more she learns of others that have anxiety/depression the more she feels not alone. She has told me that it helps her know she can continue and not let it define her.

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    1. Please tell her she’s not alone. Also, she may always struggle with depression and anxiety to some level, but I think as you get further along in the journey you understand what tools are helpful to you.

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  3. I really enjoy reading your blogs, this one was so heartfelt and honest. You have nothing to be ashamed of in being hesitant to publish this message. Being vulnerable is tough, but you’ve opened the door and shed some light on a topic that many people don’t understand. Thanks so much for sharing.

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    1. And thank you for reading and for your encouragement. Sometimes I choose not to share things because some people won’t understand them. However, the way to help people understand is to start talking.

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  4. Your courage inspires me. I believe that when we are vulnerable, we are strong as well. I am proud of you for opening up in order to help others on this journey in life. Because, truly, isn’t that why we are all here ~ to help each other? This was so well-written and tugged at my heartstrings from all angles. I am so grateful that you hit publish. Keep up the great work of inspiring us all. You shine! ♥

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    1. I have heard from so many people today who commented that they completely relate to my journey. This both warms my heart and makes me very sad. But it definitely makes me grateful that I hit publish!

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    1. Thank you. The number of comments I have gotten today from individuals who say they can relate is just astounding. It amazes me that so many of us suffer but mental health issues are still stigmatized.

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  5. Elaine, thank you for your courage in posting this. Your life experiences help so many people. I only wish I had gone in for help sooner. Even after therapy and starting anti-depressants after my 4th child, I thought I had no reason to be depressed and should not need medication so I tried to stop taking them twice. I finally got it when my doctor asked me, “If you had diabetes, would you think you should be strong enough to not need medicine?” Now I’m just thankful that the medicine is available and I’m able to afford it.

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    1. Thank you for sharing that. I bet I have tried to stop taking the medication about seven times, and each time was a complete disaster. And I always joke that if I lived in the 1800s, I might have to live my whole life curled up in a ball in the corner…I am very grateful that I live in an age where the medication is available and that I am in a position to access healthcare and afford it.

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  6. Thank you a million times over for pushing “publish.” Your strength and insight have already touched so many, judging by the comments. Knowing I’m not alone is both incredibly sad (because no one would ever wish depression on someone) and helpful (because Im not alone). Thank you again.

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    1. I have had so many people reach out to me and say that they relate to my post. I am happy for the positive response but I am also sad that so many people can understand the feelings I’m talking about. You are absolutely not alone.

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  7. Elaine , well done for talking about it. Stigma is often a result of people trying to make them self feel better at some one else’s expense, it is their problem , not yours. Those people are often very bland and insecure, tHey feel stronger by trying to put others down below themself. The beauty of your medications is you are able to control the side effects of when you feel really rotten, there is absolutely no reason to let others belittle you , feel sorry for them instead that they are stuck with such bland personalities. History is riddled with people who have produced wonderful works of art and music, because they have your same type of spirit and personality as yourself, just look at how well you write! Try looking at yourself as a wild spirited horse that occasionally needs to be kept under control . Don,t turn in to a donkey! Keep up your great work!

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  8. Hi. I’m Katie’s cousin and Dana’s friend. I really, really appreciate this post and it brings a great deal of comfort to see that Katie’s story is helping people talk about these issues. Would it be okay with you for me to share this with the rest of our family? I understand if you don’t want it shared more broadly; either way, I am grateful that I had a chance to read your post as well as the comments. Thank you.

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    1. Please feel free to share! I want you to know that Katie’s story has started a dialogue on campus regarding mental health issues. On a personal level, it’s made me more open to talking about my depression. And there are some outreach efforts and initiatives happening on campus as well. In fact, I am just starting a new research project on barriers to students seeking help for mental health issues. You are welcome to share, and I’m more than willing to talk to anyone in your family if it might help in any way. I’ve worked on campus for 9 years and I’ve never seen this much open discussion about depression and anxiety.

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