Are You Overdosed on Toxic Positivity? Take the #RealTalkRare Challenge

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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Has anyone ever told you to be thankful that things aren’t worse after you’ve received upsetting news? Have you ever felt pressured by others to be grateful, even in the most difficult circumstances? It’s happened to me more times than I can remember. I now understand that both of these are examples of toxic positivity. 

Toxic positivity refers to a distorted belief that pervasive happiness is the key to wellness, and that positivity is the only acceptable emotion. Given this, other normal human feelings like sadness, anxiety, anger, fear, and pain, which are perceived as negative, are invalidated, devalued, and dismissed. 

Does this resonate with you? I bet it might if recent discussions about the phenomenon among staff here at BioNews, the parent company of MS News Today, are any indication. 

We agreed that toxic positivity is pervasive and often misunderstood. In fact, many of us realized that we have inadvertently subjected ourselves and others to it when we were trying to be supportive. Through these conversations, we gained a deeper understanding of the concept, vented our pet peeves, shared ideas for solutions and healing, and laughed a lot.

We concluded that ultimately, when we have a better grasp of what toxic positivity looks like and how it affects us, and when we share ideas about how to navigate it, we begin to feel a little more at ease and at peace. 

That’s why we created the #RealTalkRare challenge, which kicks off this week with this column and various social media content. As part of the initiative, I challenged myself to get real about my experiences with toxic positivity. I’d love to hear from you, too!

Stay tuned, as several of my fellow columnists will be joining the challenge and exploring the topic in coming weeks. 

“It could be worse,” someone once said to me after I’d told them about a difficult appointment I’d had with a neurologistI’d just been told that my disease had progressed, and just like that, everything had changed. I pondered the platitude I’d received in response, yet I disagreed in silence.

That was five years ago, and while I remained quiet at the time, I probably wouldn’t do the same if it had happened today. In that moment, I needed empathy and understanding, not a soulless cliché. When I received the latter, I was taken aback by its banality.

Eventually, I realized that by not being straightforward with the person I was talking to, I had started down a path of forced gratitude that would continue until I eventually overdosed on toxic positivity.

“Toxic positivity is absolutely a thing,” behavioral therapist Amy Brodsky noted in a post for the Cleveland Clinic. “It comes from a misinterpretation or an exaggeration of a really helpful tactic known as ‘positive reframing.'”

Cultural norms are responsible for perpetuating toxic positivity by overemphasizing joy and failing to acknowledge anxiety and depression. We are inundated with positive messaging on social media, television, and the radio, and in magazines. The toxicity lies in the inequity. Because happiness is so highly esteemed, we make people with other emotions feel excluded and ashamed.

There is a learned response to unwanted feelings and emotions. When I was young, I invalidated negative emotions. I knew that positivity was required. When I smiled instead of cried, I devalued my pain. And in doing so, I devalued myself.

I coped and hid those feelings. I stuffed them so far down that I fooled myself into believing they didn’t exist. But they did. And like a kettle under pressure, I erupted, and the fallout left me bewildered.

I am no longer scared by my emotions. All of my feelings are validated. I unlearned the need to quickly fix myself and others with a dose of positivity. While I enjoy being a positive person, I haven’t limited myself to being only that. When I finally accepted this, I could truly open my arms to others.

I’ve heard every anecdote imaginable for multiple sclerosis. Today, I’m more guarded than before about whom I’ll share details of my diagnosis with. I cherish and covet my feelings. And while a nudge toward positivity is always appreciated, I deserve to be respected if I choose to stay exactly where I need to be.

As a self-described optimist, I applaud the essence of positivity. It has helped me navigate so much of my life with MS. But positivity cannot be force-fed unto others or ourselves. I have binged on it only to turn into a human Hallmark card.

How has toxic positivity affected you? How have you coped with it? I invite you to join our #RealTalkRare challenge and start a dialogue with us and others about this all-too-common phenomenon. Let’s explore together, debunk myths, and help one another find greater calmness in our complicated lives. Please share your thoughts in the comments below, at our social media sites, and in the MS News Today Forums.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

John Connor avatar

John Connor

Hi Jennifer,

I was usually described as a glass half full sort of person.

Since getting MS I'm more of the glass is empty but I still have a mouthful of beer. I'm more than likely to spit it into someone's face if they acted this way!

Thankfully no friends [well, my best one is also disabled], work colleagues or family have ever deserved a drenching.

Cheers John

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi John,

Thanks so much for your honesty. I went full-tilt positive mania then leveled out to reality. This experience was all it took to make changes in my friend zone as well as my own.

I love the imagery of beer as it drenches toxicity! I’m happy you haven’t had to use your weaponry.

Warmly,
Jenn

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Jessica avatar

Jessica

Hi Jennifer,
I’m so glad you have voice to toxic positivity. I’ve had Lyme and co infections, transverse myelitis then MS for years and heard all sorts of statements like it could be worse blah blah. The worst one for me is “If you’d just exercise more you’d feel so much better.” I’m an ex athlete and believe me I’ve tried everything to regain some level of fitness. Unless I take it very easy in workouts, I’ll crash and burn for a week after exercise. And the comment really invalidates who I was and who I now am and it’s such a blow off I don’t talk to those people any more. Some are family members!

What I am grateful for is my group of autoimmune friends with whom I’ve shared infusion space, telling life stories and gripes and tips and tricks for living with debilitating symptoms. They get it! We’ve laughed about hurtful comments and cried the pain of losing old friends. We try to remember being not disabled and how to be whole. Having a group of friends who understand takes away being on guard and leaves us open for real discussions.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Jessica,

Thank you so much for joining conversation.I really relate to your blow off as that is exactly how it feels. It is insulting to hear cure-all's - I am fairly certain we would do whatever it took to get better. As an ex athlete that has to be so frustrating and a lot angering. It is really invalidating.

I am glad you can find honesty and space to just be among people who get it. In joining our conversation we are elevating the conversation. Thank you for your openness Jessica, I personally appreciate and honor this.

Warmly,
Jenn

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Ingrid avatar

Ingrid

Jenn,
Great blog post. I wish there were share buttons so I could share it on social media!

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

HI Ingrid,

Thank you so much for taking the time to read and respond. I do believe there are share buttons for Facebook but I will double check and get back to you!

Warmly,
Jenn

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Ingrid! Upper right there is a link for you to copy then you can post on Facebook or social media. Thank you for doing that!
Warmly,
Jenn

Reply
Ben Helps avatar

Ben Helps

While I wouldn't say I quite "toxic positivity" myself often when someone asks how I'm going, I'm often at a loss and so answer something like "fine", "not too bad", "could be worse".

I understand they probably asked from a viewpoint of meh through to actually caring, and I know if I say something that comes across as not "fine" enough it will likely create an awkward interaction as they try to find a real response.

I think for many asking how you are doing has become so commonplace that it's almost rote, as is the expected answer of "fine".

There's also the fact that I probably _could_ be worse, and I'm still not sure if any symptom is worse, or it's just a momentary thing due to weather/stress/just cos.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Ben,

Thanks for writing. I hear you when you say you are fine. It is a quick fix to a very long answer that would invoke that awkwardness as you say. The responsibility to be fine does not lie on you, however, I hear what you are saying. Thank you for contributing to the conversation!

Warmly,
Jenn

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Walter Hawthorne avatar

Walter Hawthorne

You know it's funny but I was first diagnosed with MS and then had to go and complete disability 3 years later the one thing I said it could be worse personally I could not picture worse in my head because I know how bad I felt but that's how I got through it but thank you this is a really good article made me feel better I put a smile on my face thank you Jen.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Walter,

Thanks so much for writing. Those cliche's are so toxic and they can be frustrating and hurtful. No one understands your position but you. I am grateful this article made you feel better; It felt really good to write it as I am received and given more toxicity than I care to admit. But we are all learning!

Warmly,
Jenn

Reply
Thomas Unrath avatar

Thomas Unrath

Thanks so much for opening this discussion. As a person living with MS, as a pastor who's done a lot of listening, as a father whose daughter died in a car accident, I've heard plenty of these comments. I've come to think people are, in some way, trying to make sense out of the senseless. I think it may be a way to put order in an out of control world, to take control rather than spinning into an abyss of uncertainty.
All of this helps them more than me.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hello Thomas,

Thank you for joining the conversation. I am so sorry for the pain you have so obviously experienced. While I can never know how you feel my heart is with you.I do believe you to be right. People so much want to wrap the obscurity of grief and pain in a box with a bow. The inability to do so creates the platitudes and cliche's we have all come to dread.

In speaking with my Mom last night, she admitted to it helping her as she does not know how to quantify her sadness. She is learning, as are all of us, how to be present and just be there for someone.

I so appreciate your comment, pastor.

Warmly,
Jenn

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Simon Oversby avatar

Simon Oversby

Just a few lines to say what a brilliant article. Until now I couldn’t understand or give what you describe a name, a label or more importantly the way in which positive toxicity is becoming more and more a universal way in which people live their lives. I thought I was going mad. Your explanation and view gives clarity and realism that we are all individuals who should not be brainwashed, sidetracked or convinced to adopt this modern phenomena. Thank you.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hello Simon,

Thank you so much for writing. Your words validate our decision to launch the #realtalkrare - so many feel like you do. I am tired of people invalidating our experience by negating our experiences. My hope is that we can elevate the conversation and eradicate the toxicity.

Warmly,
Jenn

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Leah Klein avatar

Leah Klein

Very well said, Jenn. I've had these thoughts but never heard it described as toxic positivity, so I'm glad there's a term for it. Lord knows I don't always know the right thing to say when other people tell me their problems, but I know minimizing their trouble is not the correct approach.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Leah,

Thank you so much for reading and commenting. I think being cognizant is a major step toward recognizing what we can say to let people know we are there without trying to sound patronizing. This concept is something we’re all learning about and elevating the conversation is the best way.
Warmly,
Jenn

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Brian O’Neill avatar

Brian O’Neill

Thank-you for writing your article on toxic positivity. I consider myself positive, lord knows without being positive, I never would have endured being diagnosed with MS in the Summer of 1993. What would you say is the difference of being positive and being toxic positive? Thanks.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Brian,

Thank you for taking the time to read and respond was such honesty.

I wish I could suggest the exact right nuance to delineate the difference but I can’t. I guess what I can say is positivity has always been one of my saving graces. I hear that from you as well. I just have to make sure I allow myself room to grieve the moments where when I’m sad, anxious, angry or hurt. When speaking I have to make sure I listen to people and offer myself as a listener instead of a fixer. I’m realizing that people don’t need my positivity to fix them as much as they want my heart to love them.

Thank you so much for such an inquisitive comment. Wishing you all the best.

Jenn

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Libbie Henderson avatar

Libbie Henderson

I mostly want to say "ditto" to M. Overby's post - very well put - Thanks. I am very pleased to have a name to put to something that has bothered me for a long time - "toxic positivity" says it all. My world contracts constantly and the concept that I would not do something that helped, without cheery, pointless "toxic" positivity is insulting. I learned fairly early on in my MS experience to not lie about how I was doing, Its amazing how difficult simple honesty can be, Honesty & negativity should not be confounded. Thank you.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Libbie,

I am grateful this topic resonated so well with you. You are wise to be honest about the state of your MS - funny how we deviate from the simplest and most honest way to be.

I am learning to do the same and I know your comment will undoubtedly give others courage to follow in your footsteps.

Warmly,
Jenn

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Andrew Scott avatar

Andrew Scott

I've not been the recipient of this toxicity but had my symptoms slightly dismissed (a couple of years ago) by a friend which hurt at the time. I think the comment was along the lines of "everyone has/suffers ". "Gee, thanks!".

I'm telling more people about my MS now since my symptoms are now visible and responses are unanimously sympathetic.

What I was thinking as I started to read your article was that I've not been the recipient of such toxicity but I find I receive a LOT of emails which extol someone's positivity or life changing choices. Or it's a link to an article saying how "you too can feel as good as xyz if you do this". I read them and react "but I don't feel like that" or "that sounds like hard work (emotional expenditure)". I sometimes feel bad/anxious that I don't feel energised with a "go team!" reaction. Am I being lazy? Am I giving in? Thankfully I "recover" with a "whatever. I really don't care" but the initial reaction is still real.

I really do appreciate that there will be people for whom such articles are a godsend and can propel people into new and productive paths but there are people who can't summon the necessary enthusiasm because life does just suck sometimes.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Dear Andrew,

Thank you so much for taking the time to read and respond.

In reading your response about receiving elixir emails I realize I have been one to send those emails. Only through learning more about toxic positivity can I do better and understand how those emails affect myself and others.

I am learning that it’s OK to sit in the suck and to just be wherever we are. There is no shame in feeling the antithesis of positivity. In fact, being disingenuous to ourselves is far more painful and dangerous in the long run.

My best to you,
Jenn

Reply
Meredith avatar

Meredith

I am the youngest of siblings,three of the four of us have MS. My oldest brother was a progressive and died in his seventies. My sister is five years older and we don’t talk about the disease period, so don’t know haw she’s doing. I am holding my own.I’ve found it’s very hard to keep my sense of humor these days.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Meredith,

Thank you for taking the time to respond.

My sincere condolences for the loss of your brother. I am so deeply sorry. It must be difficult to have another sibling with MS who does not want to talk about things. You have had no option but to be strong on your own. That can be really difficult when you feel sad, anxious or lonely.

Your sense of humor is weighed down by so much. Sometimes it helps to find another who understands what we are experiencing. Have you reached out to your local National MS Society? I did that when I was first diagnosed and it helped me feel like someone heard and understand my experience. Can Do MS is another wonderful resource you might find helpful.

Warmly,
Jenn

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Mark avatar

Mark

Thanks for writing this, it's a good way to describe a few people I know.

I actually get people say to me 'yeah but let's not talk about that now' when I obviously do want to talk about it and that's why I started the discussion! Sorry to ruin your day.....big smile everybody!!

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Mark,

Thank you so much for reading and commenting.

You are sadly so accurate. Some become really uncomfortable in the MS zone or anything not positive. In an effort to make themselves feel better they deflect. But they also deflect us.

Thank you for joining the conversation.

Warmly,
Jenn

Reply
Lisa avatar

Lisa

I was just talking/ranting about this issue to my partner the other day. A friend of ours feels I am not positive enough. He asked me if I ever heard of affirmations. He is in some kind of bubble that seems kind of crazy or infantile demanding that I be 100 percent positive around him. If not, he seems to exit rather abruptly. It hurts my feelings. I am not that bad! I feel dissed. Lately I started examining my feelings toward him (unusual for me as I am usually very accepting toward my friends). I realize I feel he is boring and priggish and controlling. You can’t discuss anything he is not interested in while he goes on at great length about installing a shed in his yard. Fascinating! I think I am beginning to recognize this dynamic is not working for me.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Lisa,

Just wow. Look at what you have discovered through denying another’s toxicity.

Intolerance is not okay. If others are not tolerant to the reality of sadness or pain then perhaps they are not people with whom you’d choose to stay friends.i am hoping he will have his own awakening around this and discover his part. If not you have taken care of yourself and I applaud you.

Warmly,
Jenn

Reply
Lorraine avatar

Lorraine

Thanks for giving "it" a name. I have lost every friend and family member because they don't get it and can't understand why I'm not grateful, happy, blah blah. I'm so sick of the MS magazines with the smiling faces advertising toxic medications and articles on how to improve your happiness. I have become very isolated because I simply don't want to hear it anymore.

Reply
Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Dear Lorraine,

I’m thankful you came across my column. It helps when someone else describes what we have felt.

I am really sorry for all the losses this disease has brought forth. You’re right, people just don’t get how it feels. It stinks to have someone preach gratitude when all you’ve felt is loss.

While I wish I had a magic elixir to help your grief and pain, I can offer my empathy. I offer a safe space to be yourself and a place to feel heard and validated.

Isolation is scary. I have had periods of my life in isolation and it’s a lot. I’m sending you gentle hugs in hopes that today you feel heard and embraced.

Warmly,
Jenn

Reply
Rick Blum avatar

Rick Blum

Sometimes get worse quickly. For instance, you might be inspired to write a poem like this:

Taking Stock on My 63rd Birthday

I am a mess
I must confess
My body is
In deep distress

My legs don't work
My arms they jerk
So sad to say
House chores I shirk

My back it aches
And all it takes
Is bending down
For goodness sakes

My brain is lazy
My memory hazy
That’s why I tend
To talk so crazy

My pee’s alright
Four times a night
But poops are rare
To be forthright

Five teeth have passed
My bald spot’s vast
And touch my flab
You’ll be aghast

My eyes are weak
My joints all creak
Ten years ago
I passed my peak

I’m not averse
To call a hearse …
On second thought
Things could be worse

Rick

Reply
Jennifer Powell avatar

Jennifer Powell

Dear Rick,

Thank you. Thank you for your expression and for capturing the MS in your life. There is poignancy in each word. The last stanza speaks so clearly of the dichotomy we live daily. Your artistry is beautiful and I am grateful you shared it with me.

Wishing you wellness, Rick.
Jenn

Reply
Sandy Koutalis avatar

Sandy Koutalis

I call friends that don't want to know you anymore due to MS fairweather friends. I am so much better without them. It takes too much of MY valuable energy

Reply
KARIN AUBREY avatar

KARIN AUBREY

omgoodness! YES! There are too many so called friends that I haven't heard from in ages since being DX'd with MS. Now, I have a small circle with whom i can talk about how bad things are. I received horrible news last week about MEI results showing new lesions on my brain stem. There are only 3 people I have told because I don't want to hear all of the "it could be worse" or "well, there could have have been new lesions in the cervical spine too" as if 6 arent enough along with the 142 in my brain and 6 on the brainstem now.. I am over it. I have one that will go on for a half hour or longer to the point that i literally have to invent something to get off the phone with... LOL.. "Gotta go! I have diarrheic!" I am so glad you wrote this blog post!

Reply
Tom Anderson avatar

Tom Anderson

Rick- Fantastic Poem!

Reply

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