The runner up on my blog post bracket was the topic of “Toxic Positivity”. For those of you that don’t know what this is, it is when people are constantly putting a positive spin on things even when a situation isn’t positive. While this may not seem like a bad thing on the surface, it can be harmful to people like me who have been dealt a truly horrible hand.
If I am being honest, it wasn’t until this last year or two where I learned about toxic positivity. I had felt it before, and probably contributed, but I had never put a name to this phenomenon. After being thrown into the cancer world it has become more apparent just how often this happens.
People typically mean well when they try to always be positive when talking to those of us affected by cancer. They might say some of the following things:
- You are so brave
- You are an inspiration
- At least you look good bald
- That’s the good kind of cancer
- You’re the strongest person I know
- You’re a superhero
- Everything happens for a reason/ it’s “God’s” plan
- Just stay positive
All of these things can be said with good intentions, but often times become toxic. They make us feel as if we aren’t allowed to have negative thoughts or feel badly about our situations. Many cancer patients have a dark sense of humor as a way of coping with what we are going through, but that makes many people uncomfortable. Here are some of my thoughts in regards to the “positive” statements above.
- I am not brave or strong for having gone through this hell. I didn’t have a choice. I was diagnosed with cancer and my options were to get treatment and survive or to give up and die. I didn’t choose to lose my husband and become a widow at 28 years old, so I don’t think continuing on in life without him makes me brave. What else was I to do?
- How am I an inspiration? What did I inspire you to do? How is my misfortune making your life better? (However, if me having blood cancer inspires you to donate blood then I will call that a win)
- The good kind of cancer? Really? What about this is good? If you ever think about saying this to someone with cancer… just stop. It helps no one!
- I am not a superhero. Who am I “Captain Chemo”? “Blood Widow”? What is my superpower? Having a body that created mutant cells that tried to kill me?
- I don’t care if I look good bald or have a good shaped head, I didn’t want all my hair to fall off my head and body without my permission. Also, don’t shave your head in solidarity unless the person you are supporting wants you to.
- If anyone ever has the audacity to say to me that it was “God’s” plan and that all of this happened for a reason, I will smack them across the face. There was no good reason for my husband and I (or anyone else) to get cancer. If it was God’s plan to take Luke away from the world, then he is an a**hole.
- There is no reason for anyone who has had a cancer diagnosis to stay positive. We are allowed to feel sad and be negative. We lost who we were before being diagnosed and are grieving the person we used to be. Yes, trying to stay positive can be helpful, but feeling our feelings is also helpful. Keeping that bottled up isn’t good.
Now I know this post turned into a bit of a rant, but over the last three years I have become more and more aggravated when people make comments like these to me. I know I am not the only one who has experienced toxic positivity. Cancer is a dark world, and staying positive all the time isn’t an option for everyone. Truth be told, you need to embrace some of that darkness in order to make the light feel brighter.
Toxic positivity doesn’t just exist in the cancer world though. Anyone who has gone through any kind of tragedy or tough experience is subject to this kind of treatment. Any kind of survivor has to deal with comments that are intended to be positive, but only end up causing the survivor to feel ashamed, angry, alone, unheard, and so many other emotions.
I would love to hear from any of my readers about comments you have received that were meant to be positive but came off as toxic. How did it make you feel?
Life, Love, and Leukemia 
I agree with you. One of the most insightful and beautifully written books I’ve read on cancer is Anne Boyer’s The Undying — and she rages mightily about cancer and her treatment. What an extraordinary and honest book!!!!!!! When I was facing a stem cell transplant, some friends said to me that I should not worry about the procedure — that it would be fine and I would be fine and all would be ok. Be positive!! In reality the transplant was very painful and hard, and I almost died. My fears were justified. Still, I think one of the difficulties for our friends and family is finding the right words to say to someone they love who has cancer. They want us to be ok and to get better and to find some joy in the lives we are able to have, even under treatment. The intention is good, but sometimes the words fail to help. Maybe we have to recognize that it is virtually impossible for anyone who has not had cancer to really understand what it is like to face your mortality (and, in your case, your loved one’s too). Perhaps the best thing we can do is be honest and tell others that positivity, finding the silver lining, accepting “God’s will,” is not always helpful. Another great book here: Kate Bowler’s Everything Happens for a Reason and Other Lies I’ve Loved. Thanks for your post!!
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Very well said Lindsey and a good reminder for those of us who have not had to deal with a life threatening disease or the early loss of one so close to us. Your words are a good reminder us to choose our words very thoughtfully and carefully and I thank you for this message. I regularly give thanks for the good fortune I have experienced over the 80 years of my life and count my many blessings. I can only offer you my love and friendship and hope you continue in increasingly better health.
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Hi Lindsey, I began reading your blog back in about June 2020 when I came across you and Luke’s GoFundMe. I am very sorry for the loss of your best friend and love and husband that was your Luke. I look forward to reading about how you are doing, and I felt sort of inspired to respond to your Toxic Positivity post. So true that I have said things that I meant to ‘help’ someone feel better, but now as I read your eloquent message I realize I probably hurt more than helped. I lost my mom to lung cancer Jan 29, 2009 at the age of 64. The thing that hurts me is when people ask ‘was she a smoker?’ when they learn it was lung cancer. Who cares? Yes, she was, for probably 40 years. But that doesn’t mean she deserved the hell she lived through. She was diagnosed in late stage 3/early stage 4, when it was just about ‘terminal’ and I watched my once vibrant, laughing, get up in the kitchen and dance mother fade into nothing in about 7 weeks. You speak of remembering exactly how you felt as you sat with Luke as he was in his last hours, I too can close my eyes and see myself in the hospital room with her the last night. You don’t have to answer this if it’s too personal, but one thing I really wanted my mom to be able to share with me was her fears at the end. What did it feel like to have doctors tell her to ‘get her affairs in order’? I so wanted her to be able to put her worries onto me and just feel it was ok to cry-I spent hours and hours sitting with her but she never said anything. I mean I know she was scared out of her mind, she talked about my son, who had just turned 6, and to make sure I took good care of him-I have suffered from crushing depression and anxiety, ocd, ptsd my entire life and she went to hell and back to help me, so I wanted to be that person for her too.
On the comment of ‘you’re so inspiring’, I will tell you how I see it. I look at things so negatively sometimes, in fact a lot of the time. I play the poor me game. I read some of the GoFundMes, and actually follow the blogs because I become ‘inspired’ to face my own personal issues with a little more realism-I have depression, but it could be so much worse, and I need to give my head a shake. People get through horrible things, because, as you said, what other choice did you have?, but I gain insight that sometimes life is appreciating what I DO have instead of bemoaning the shit, and I have gone through shit, but never had cancer or a life threatening illness and my son was quite sick many times as a child and has Asperger’s and school and life has had it’s struggles, but I gain inspiration from people who go through way, way worse and still find ways to bring other people up.
So in a round about way, without knowing you or Luke, both of you through your openness in sharing your private moments has made me stop and give myself a slap and tell myself I need to be more understanding of exactly what a bad day is. I thank you for your candid ways, your willingness to share your life and your love for Luke, and believe me there are so many people out there that you touch.
I wish you a belated Merry Christmas and early Happy New Year, give Zoey and Penny a big pat from me!! I have 2 kitties, Julian and Bella, but I sure am jealous because they would never cuddle up like the Prettiest Penny does 🙂
Love from London, Ontario
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