I’ve been pondering the concept of toxic positivity for some time now. You know, people who insist that a person with an uncurable, progressive disease (ahem… systemic sclerosis) can get “better” if they just get some sunshine and exercise. People who suggest that the symptoms of a failing heart and lungs are “just old age”, or that debilitating brain fog is something that everyone deals with. People who keep suggesting possible cures of the herbal or holistic medicine variety, or that if I just try hard enough, I will magically go into remission and get well. People who insist that no one knows what will happen when you disclose serious new complications, or people who over-celebrate a small gain. I know that they mean well, but it is isolating and hurtful: it is a denial of my reality.
I lost my temper and snapped off at one particularly obnoxious person at a holiday function who was arguing that I just needed to stay positive and try harder so I could get better… “there is no better, there is only this”, I told her. She was taken aback, and then doubled down and insisted that people do get better if they try. In my defense, I should mention that she had also just told me that her daughter’s diagnosis of a serious illness was awful because her daughter was young, but what was happening to me wasn’t such a big deal because I was old. Yeah. Toxic. My doctor told me that she was lucky that I didn’t hit her. I love my doctors!
So, why is toxic optimism a problem? Well… toxic, right? It’s a denial of what is actually happening while throwing up walls that distance and protect you from the painful thing that is happening. It’s ensuring that you won’t get involved. Some of those walls are an insistence that the person will get better, or they aren’t actually all that sick, or that this is “normal”, or even suggesting that somehow the person is actually at fault for their own illness/condition. Not helpful, people. I was already thinking about how to frame this in a post when an article from The Atlantic called Tragic Optimism is the Opposite of Toxic Positivity arrived in my news feed several days ago. Okay, this is close to what I’ve been thinking about, but tragic optimism isn’t exactly what I’m trying to achieve here. No tragic, okay? In my mind the process of flourishing in the face of adversity requires grace and courage: walk into the darkness, face down the monster, deal with it (severely), and then continue to thrive and shine (like a sunflower, goddammit!) from within the heart of the storm.
So, it was kind of amazing when I watched American Symphony last night on Netflix.
This is what I’m talking about. It was hard to fight back the tears as Jon Batiste and Suleika Jaouad put into words and action the things that I’ve been thinking about, but so much better. Jon Batiste says… “look into the darkness and despair, face it, but don’t let it consume you.” YES!!! This is what I’m talking about, people. “Accept the possibility that you might fail, but absolutely believe that you will succeed,” Jon says in the film. Without any doubt, Jon and Suleika are at turning points in their lives: they have just married, Jon writes and produces a symphony that is to be performed at Carnegie Hall, and Suleika undergoes a second stem cell transplant to treat her relapsed leukemia. I know people who have undergone stem cell transplants (it is used to treat extreme cases of systemic sclerosis too), and it is a lengthy, horrible process of dancing with death while hoping for life at the end of the tunnel. This is a raw and emotional documentary of extremes; for this young couple, they are navigating the highs and lows simultaneously. The stress is crushing, and the emotional toll is heartrending. In spite of this, they cope, they walk into the darkness and face down the monster, they shine from within the heart of their storm, and the documentary ends with the performance of American Symphony at Carnegie Hall with Suleika in attendance.
In my opinion, every significant battle begins with the thought… okay, this is happening. Recognizing your situation is not a sign of weakness, but of strength. The action plans, sense of purpose, and the ability to keep rolling with the punches comes later. There is no place for denial if you are going to battle! Also, as this couple shows in the film, you need some creative outlets if you’re doing battle. Suleika paints and Jon composes. I take yarn along.
Today I started listening to Suleika’s story of her first dance with leukemia and the recovery afterwards.
I’m not sure that these two would embrace tragic optimism, but they sure are shining examples of the opposite of toxic positivity. I think that I’m going to be learning things from Suleika while I listen to her reading her book, knitting away on my new sweater. With my newly blooming orchids. And my cats. Within my own little scleroderma storm, the monster locked safely away in the cupboard. Pipe down, monster. I’m knitting now.
Yarn, Books & Roses 
I love your doctor, too. Our doctors can and do make all the difference. If they don’t, we need to keep looking till we find one who does. They are our brothers/sisters in arms.
My doctors are the best, but they aren’t my first doctors. I had to kick a couple to the curb along the way to get these guys. 🙂
So very sound, Marilyn. I’d call what you do every day Living Reality
Thank you.
I’m sorry for all the dunderhead comments you must get. I am so impressed with your resilience! And that Orchid!!!
That’s what they are… dunderheads!! In my mind I have been thinking of some people as Ferengi (a Star Trek species lacking in courage), but dunderhead sounds pretty darn good, too. The orchids are really rocking this year.
Oh, I know all about the Ferengi, but that wouldn’t be fair to Nog and Rom. And…Quark has his qualities too! 🙂
Everything you said! My first experience with toxic positivity came as a bedside volunteer at my local childrens’ hospital. I volunteered on general pediatrics and hematology/oncology. The kids were always looking to talk with me because they couldn’t around their families. They felt it would be too much for their families to engage in real talk. The first time, I was surprised, but the more I thought about it, the more it made sense. You really expressed what the kids shared with me so well.
Suleika has a blog on Substack – The Isolation Journals. She does a weekly gratitude prompt, poetry and other posts. It is so uplifting.
Oh, those poor kids. How hard and unfair for them to have to pretend that everything is okay when they are dealing with so much. One of the things that I learned during my years in the classroom is how empowering it was for kids when I voiced an acknowledgement of the difficult things that they were dealing with. They just wanted someone to recognize that they were dealing with a lot, and they were right to feel upset. It was important to validate their feelings, and often I could see them pull together and express relief. It was like someone finally saw them, and that was enough.
I just signed up for Suleika’s newsletter. Thank you.
Hi, Marilyn –
It’s been awhile, but I wanted to thank you for this post. My husband had a stroke in May, my aunt died in June, my mother and our precious cat Augie passed away in August. My beautiful husband has gone on to have other strokes that have left him with almost unbearable, life-altering health issues that we struggle with almost every minute of every day. I’ve gone from moving through the days in a stupor to trying to find a way to connect to life even in the midst of the stress and fear and sadness. Your post makes me feel less alone and gives me hope that there is a way. I just have to make it. I’m so grateful to you for writing your blog and sharing what you do and for keeping on and pointing out the joy and humor and beauty of life even when that picture is more complex than we might like it to be. Thank you so much.
–Melinda
Oh, no. You’re in the middle of a whole firestorm of awfulness. Hugs. I hope that you are getting the help and support that you need while getting through this. I understand exactly what you mean about stress and fear and sadness; grief is a bitch and sometimes just getting through the day is the best you can do. I wish that I lived near you… I’d be sending over a casserole at least once a week. 🙂 Knit and write and get outside if you can; it does help. Hugs again.
❤️
That obnoxious TPer at the function you attended isn’t worth your anger. Although she may be technically healthy, she seems in terrible shape because her brain is root-rotted, convincing her that if she tries to keep going, there will be a happy ending. Actually, she’s to be pitied because her Disneylandish myopia might be all that’s keeping her going, given her circumstances.
She is so socially inept I almost asked her once if she was raised by wolves. I keep making allowances for her, but some days it is hard… mostly I avoid her because… TOXIC!!!
You write so eloquently about this struggle. Do you think part of the constant “look on the bright side” approach is that people don’t want to think about the difficult reality of a chronic illness? I have this conversation a lot with my MIL. She firmly believes in the power of positive thinking and that is the be-all/end-all point. She doesn’t want to talk about medication regimens, or needing naps, or having to ask for help with things you’d really like to do for yourself. And I don’t get that because it’s all part of the picture of a chronic illness. Just wishing things were different really doesn’t ever MAKE them different in my experience.
I absolutely think that the constant “look on the bright side” approach is a denial of the difficulties of chronic illness. It like they can’t wrap their minds around the concept of “chronic”, or they can’t admit what is actually happening. I am also irritated when people tell me that they are praying for me; I asked one what they were praying for, and it was to be cured. No, I said, you’re praying for the wrong thing. Everyone dies: pray for grace and courage, because that’s what I need, I told him. He was kind of shocked I think ; no one had ever said something like that to him before, and he is a pastor!! I think that it is healthier (mentally and emotionally) to be realistic about difficult situations; it is crazy, but when I’m avoiding things (like make an appointment because I have new symptoms) I realize it is because I’m afraid or can’t cope. Once I face it down, make the appointment, and then get the new diagnosis and treatment plan, I feel better and sleep much better at night. No one ever got better by wishing things were different.
You write beautifully about your journey. I hope it is well-tagged so that others who need to hear this find it. My sister has primary progressive MS, the kind that never had a remission. I attended a party and a woman approached me and tried to sell essential oil for her symptoms. I was gobsmacked and it showed. She later half-apologized.
I get steam coming out of my ears every time someone talks to me about essential oils. I am so sorry to hear about your sister. MS is so difficult, and progressive conditions can just wear you down. Hugs to both of you. There is such an anti-science movement going on right now, and anti-vax and alternative medicine is part of it. In my opinion, if you have a really serious disease, you need really serious, targeted medical treatments. I’ve been encouraged by the new drugs that are now in the pipeline for several serious conditions including SSc and MS.
I have a client who’s wife died from cancer several years ago. He told me that people were always offering “advice” on alternatives, convinced they would bring about a cure. It’s hurtful, insulting, and arrogant in my opinion. My sister has never had a remission, so the research larger falls to relapsing remitting MS. She’s lost so much over the years, going from cane to walker to scooter and now virtually no mobility at all. She’s been tenacious throughout the years, but her body has changed in ways we could never imagine. Long, progressive diseases are exhausting, but you already know that. The anti-vax and anti-science mentality belongs in the dark ages, IMO.
I have been just stunned by the anti-vax and anti-science movement. It is kind of linked to a disregard of knowledge and experience in favor of money and raw power (ahem.., guns) and I don’t think that this bodes well for the future. I’m so sorry to hear how things have gone for your sister. It is just crushing how progressive diseases keep stealing away all the things that other people take for granted.
It’s worrying isn’t it? I never thought a man like Tr***p could win the highest office in the land, nor did I think the supreme court would overturn a woman’s right to make decisions about her body. It’s shocking, disturbing, angering, and wrong. Now states are trying to limit the roads someone chooses to have an abortion out of state. It’s a bit too “Margaret Atwood” for me to stomach.
I’m sorry for you and for my sister, seeing you struggle ever day while your fight for a good opinion or the right kind of support from a doctor. I could go on and on. Sigh
I share your worries. I was at the car dealership getting the oil changed in my car and the television was on NewsMax. The coverage was all about how horrible Obamacare is, and how it has destroyed the health care system. I was like… what? I’m a regular participant in that health care system and it is working great from my perspective. Then I noticed today that Tr***p was campaigning on replacing Obamacare. Yikes! I have been continually shocked and outraged by the lengths some states are willing to go to refuse women essential health care or care to transgender children and adults. I saw an article recently about the Texas AG asking for the medical records of patients from a Seattle hospital that provides transgender care. This is way too “Margaret Atwood” for me.
I just want to add that these states also found mask mandates and public health measures to be violations of constitutionally protected “rights”.
These so-called news outlets should be required to run a disclaimer saying, “This is just our opinion, not really news at all.”
I’ve never understood the hatred and the need to control someone else’s choice, when as you say the same people that are anti-everything except being white, male, and entitled think it’s okay to stomp on other’s rights while trampling on the importance of wearing a mask to protect others. I fear for this country, and I’m absolutely dreading this election year.
I’m dreading it too.
😢
I am so sorry that you have to deal with these insensitive comments on top of all that you are already dealing with. You really do face your situation with grace and courage!
You know, the things that people say are so intrenched into our culture that people just say them. Things like…”It will be all right” just isn’t the right thing to say sometimes. I especially hate “Everything happens for a reason” or the very well meant “Well, you look great!” that people often tell me. Usually right after they comment on my oxygen machine… People don’t mean to be insensitive, they just don’t know what to say and one of the common phrases meant to cheer people up just pop out.
I think you are very right – sometimes it is hard to know what to say.