The Peril of Toxic Positivity — Too Real to Pretend

This has more to do with the person telling us to look on the bright side than it does with us. My take on this is that it is borne out of inner fear being experienced by the other person. A person who cannot comprehend what we are going through is scared. By saying look on the bright side, they are appeasing themselves. I am not sure I blame them. But as far as I can tell, this is a way for other people to lessen the impact of the uncomfortable feeling others get when they speak to someone with a serious illness. I do not believe that those of us suffering from MS also suffer from toxic positivity. There is no way to jettison ourselves out of our own reality. However, those close to us that really have very little conception of what our bodies are going through are afraid that we might be telling the truth either through our visual disability or verbal communication. The response then becomes, "no no, it isn't that bad, look on the bright side". The only way for others to relate to our chronic illness is to minimize it by Toxic positivity. It is only toxic to us because we live with the disease. To them, it is a salvo.

Good column! Amen!

I am so glad you are addressing this issue and naming it. It's infuriating and demoralizing and happens all too often to those of us that have ms. I haven't gotten the strength yet to speak forthrightly to anyone expressing toxic positivity. The social rules make that practically impossible in most situations.

Hopefully toxic positivity will become better understood, so thanks for writing about it.

Hello Teresa, I read another article similar to yours recently. Both are very well written and make a valuable point. I have also read many replies to online articles that appear to be either aggressive or blindly partisan. I hope the following is neither of those things. My wife suffers from MS and looking on the bright side has been something we have both thought long and hard about. A close friend dies and you can celebrate a life. Bad luck arrives and some of us can be grateful that we live in modern, wealthy societies where there is help for the less well off and some of the best medical treatments in the world. But it is the illness itself (MS) that we have considered the most. Suppose everyone in the world could fly. Everyone could soar like seagulls and fly high above the ground. But, due to a flying illness, I find I can't fly. And I feel terrible and handicapped and ruined. And people suggest I look on the bright side. I would actually be in exactly the same position I am today, sat in the sun, drinking coffee and reading online articles. I can't fly today and I won't be able to fly tomorrow - but there are different ways of looking at that. It is only a thought and in no way a criticism of anyone or any viewpoint. And I do understand the pain and crippling side of the disease. My very best wishes to you.

100 times YES.

Hi Donna,
Thanks for reading the column and sharing your thought provoking and genuine perspective. I agree that discussing MS and all that we endure is difficult for others, especially those who love and care for us. I also agree that there are occasions when "look on the bright side" becomes balm to quell the fear and uncertainty in others. In having these difficult discussions, we shed light on the effects of "toxic positivity" while maintaining hope and faith. I've learned that grief and gratitude can coexist, and hope can thrive, even amidst pain. Please take care and best wishes to you.

Hi Jerry,
Thanks for taking the time to read the column and for your comment. You are appreciated. Please take care and best wishes to you.

Teresa

Hi Cay,

Thanks for reading the column and for your candid response. I believe there is great power in having difficult discussions. Together, it is my hope that we will dismantle the social construct that silence our pain. May you be strengthened in your journey knowing you're not alone. Best wishes to you.

Teresa

Hi Russ,
Thank you for reading the column and for your honest feedback. We agree that grief and gratitude can coexist and joy can be found in the midst of pain. Personally, I count my blessings and my troubles at times. My intention in this writing is to remove the stigma and construct that often tells us we should remain silent in our pain. Faith and a positive attitude is often a prerequisite to withstanding adversity, yet I believe that we must allow ourselves to fully ingest those feelings that arise. There are occurrences where we cannot do it alone and may have to summon help. It is my intention to discuss this topic, and contribute to an environment where healing can occur both internally and socially.

Again, I appreciate you and this thought provoking response and I, too, agree that there are always different ways of looking at life. It is my hope that we can raise awareness, standing in support of our communities as they work through adversity, take up space and stand in their authenticity.

My best wishes to you and yours.

aWhen I was finally diagnosed with MS I bought a book on living with chronic illness. It suggested that when someone asks how you are you should lie and stick to positive route. If you told the truth they would never ask again.
I wound up pretending everything was fine and being frustrated because people didn’t understand how hard things really were.

Hi Carol,
Thanks for reading the column and for sharing your thoughts. It is appreciated!

Teresa

Hi Patsy,
Thanks for sharing. I understand your frustration in feeling as though you have to hide your truth. I am sorry you experienced this. There is a difference between having a positive mindset and stifling one's emotions in real time. This journey can be difficult. Please remember that your experiences matter and you are not alone. There are many online support groups that may be of assistance. Best wishes to you.

Having been diagnosed on my birthday, (had to look up the year from the computer, then calculate), almost 25 years ago. I've bed through the bad, the ugly, and the unbearable this disease has to offer. BUT, I thrive on positivity. Yes, my parents passed away just a few years ago, and they never understood. But I looked so good. Anything they heard or saw went in one ear and out the other without ever registering. Never any compassion. BUT, MY Positivity for myself, gifted by on diagnosis day, in the hospital while my Neurologist attempted to "reset my immune system"? with massive dosed of steroids, my room mate in the hospital laid in his bed with his chest literally split open, covered only with clean sheets, after quadruple bypass surgery, and a steady stream of hospital personnel irrigating in an attempt to get rid of a I guess pretty nasty infection. Time went by, and my room mate got better, enough to leave at about the same time I did. Since then, "It can always be worse" was ingrained in my mind. BUT, we both survived, so on with life I went. Yes, only to live pushing onwards with the ugly disease. I kept working for Many years. Some of my "greatest accomplishments?" I learned to climb a ladder without the use of my legs, okay, my arms did 95%. I could bounce off walking into buildings in the city getting to my next estimate, not to stand out because the neighbor hood was filled with drunks and druggies, as I made my way to the xyz hospital for work there, I simply thought, I fit right in! Always, trying to keep a positive attitude. Yes, life with M.S. is a struggle, always, as it is trying to see the fine print on my XL screen computer trying to type this, but, I could write pages and pages of all the good I've accomplished, and continue to. I'm down to my favorite assistive devices, a shopping cart, or a power driven hand lawn mower without the need to wear a 25# vest loaded with ice packs, and a cooling headband. Though a sweat drip band these days does keep the sweat out of my eyes when it's really hot cutting the grass. I simply keep on thinking of the 45* below blast freezer estimate that I did in my winter coat, a windbreaker, when the facility personnel kept trying to give me this arctic gear, including gloves I could never write notes in. When I came out, I never felt so refreshed in my life! Jokingly asked when I could do it again. How I didn't get frostbitten in that long no one can explain. Anyway, I refuse to ever feel sorry for what could have been, and focus on what it can be, and push ever harder to try and get there. Okay my expectations may be a bit lower, but I loved fishing since a kid. All those years too busy to do so, only dream about it. Now I can fish!!! When..., and if...BUT I CAN!
I LIVE and THRIVE on POSITIVITY. I know perfectly healthy people, except for minor things I don't even see when I get them, like a sore or achy xyz, and they're always NEGATIVE. Definitely not the way I want to be, as they are more crippled than I. Please, don't poison positivity. Life is better Positive, than Negative, no matter what it is.

Hi MarkUpnorth,
Thanks for reading the column and sharing your story. Your strength and tenacity are inspiring.

I truly believe that an indomitable will and an optimistic attitude are virtuous. They have allowed me to withstand and persevere through many challenges. My truth is that I encompass both joy and pain.

Please know that I am not poisoning a positive attitude. My column intends to dispel the stigma that we must make others comfortable in our pain and adversity by masking our feelings in real time. The pressure to do so often puts an undue burden on the person that is struggling, making it difficult to express their truth. This is the crux of toxic positivity. I believe that there are lessons to learn in both the positive and negative experiences of life.
Employing a positive mindset is encouraging. What I find discouraging is conforming to a truth other than one's own. For me, I have to feel it to heal it, while never surrendering hope. Again, thanks for your honest feedback. Best wishes to you.

Teresa

Thank Goodness I believe in positivity! In the worst situation with horrible symptoms, I have picked myself up and beat Primary Progressive MS. At over 50 years old I have my life back and helped other people pull themselves out of the negative and negative stressful cycles of MS and see improvement and healing. Positivity, determination and hard work saved me. Positivity provides hope, and hope visualization of a path to a better future.

Thank you for sharing your article with us. As i read the article I realized that I have become unaware that I dismiss my feelings and what I am actually dealing with so that my loved one's don't worry or feel saddened by my struggles. I have secondary progressive ms and have to use adaptive devices to get around. Its depressing and extremely frustrating. Within the last few years I've lost my parents,brother ,sister and newphew. The daily grief and sadness that i feel daily is unbearable at times, . Thanks for helping me realize it's ok to literally breathe and live in my feeling and truth without worrying about everyone else. Ty

I don't understand the term Toxic Positivity. It seems like just another label. I feel I am fortunate because my MS has been mild since the day I had a symptom that led to my diagnosis; I was 57 and had no real clue before that. The situation is what I call reality. I have what I have and accept it. I was left with foot numbness due to transverse myelitis. I just live with it. When I think about it, I know it is there. When I don't think about it, it doesn't bother me. It is more bothersome at night in bed but I ignore it. When people ask me about how I feel with my MS, I say fine. Not everyone knows what it is like to have an MS diagnoses. If I can, I try to educate them. I have some other issues which could be MS or it could be Old age issues or both. I live with it. That is it. As it is said, "it is what it is." After I turned 70 I came off MS medication. It has been about 2 plus years now. Far as I can tell there has been no difference in how I feel or with my annual MRI results. I accept my situation. My MS could get worse and I am hopeful it won't and grateful it has not progressed. Maybe I would feel differently if my situation was worse and I feel sad for those who are not as fortunate. I just don't feel toxic positivity applies to my pragmatic being.

Wonderful article!

I have been the recipient of much 'toxic positivity', even my neurologist, and felt my feelings/symptoms were minimised and diminished...but, you know who the biggest culprit of the dreaded TP was in my life? Myself.

I was like one of those awful gym instructors, fitness gurus...hey, ho, here we go, push, push,push 'til the bitter end...and slowly destroying myself mentally and physically in the process. No-one saw the pain, the anger, the grief, just the idiot smiling face and false acclamation of, "I'm fine!" ringing in my ears, when patently, I wasn't fine at all. It took the caring observation of one of the ladies that comes to help me (and that was another major hurdle to face) in my day to day activities to bring me hurtling back down to earth with a thud, and I am so grateful to her for her pertinent observation after seeing me slowly, minutely crumple on a day to day basis over the course of several years. Occasionally the mask slipped, but she tore it straight off my stupid, smiling face to reveal the frightened, unwell and floundering human being underneath all that deceit.

I now have found a lovely councelor, and though it is a difficult process, I have vowed to be truthful and honest in my dealings with her...even if the great 'out there' still sees the facade (No-one wants to hear anyone whinge, it is just too confronting and uncomfortable)...and there are years of perceived slights, injustices, outrages, sadnesses and grief to unpack, from childhood...60 odd years of misery amid few highlights. I abhor self pity, but it is just nice knowing that, for once, I don't have to gloss over the trauma and have someone to talk too.

Wishing everyone reading this all the best...Love you all...

xxx Yvonne

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I also feel the fastest way to make someone run is to open up you can of negative emotions. We DO need to grieve our losses but I come from a place where I like to grieve on my own and not pull others into my pain. I’m optimistic so always looking for the brighter side of life no matter what the issue. It helps me re focus. Now, that’s not to say I wouldn’t open up to a group of other going through the same problems then I would be more likely to let it spill.

Hope this makes sense.

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Hi Bill,

Thanks for sharing your thoughts. We agree that having a positive mindset is necessary. Toxic positivity is a different concept than employing optimism. This column specifically speaks to masking one's pain for the comfortability of others.
Continue to be a light and encourage others to maintain hope. Best wishes to you.

Teresa

Dear Patsy and Teresa and others,
It took me a while to learn that I have to lie, as with friends I used to be more truthful. I sent the "toxic positivity" article to my toxically positive relatives and spoke to them about 'validating" and not denying the pain of others.
Thanks,
Trish

Dear Patsy and Teresa and others,
It took me a while to learn that I have to lie, as with friends I used to be more truthful. I sent the "toxic positivity" article to my toxically positive relatives and spoke to them about 'validating" and not denying the pain of others.
I perceive the "toxic" aspect as being related to blame. If I would do a, b, or c, this would not be happening to me. If I think positive, then I won't feel so bad about not being able to walk/see the screen/etc.
I see it as being parallel to blaming women/girls for being victims of sexual abuse. It's just another form of blaming the 'victim' .

Thanks,
Trish

I enjoyed reading the original post and subsequent comments and it caused me to think about where I am on all this. Since my diagnosis some 26 years ago I have always tried to think and act in a positive way and I believe this has helped me to maintain a god balance of hope/expectations/managing reality. Indeed it makes me feel much better when people notice it.
Its tough and I am well aware of how 'small' my life has become. I see it as a funnel, starting broad and getting narrower over time.. But I do believe that its about continuous re calibration of things. Also, being real about how you feel about things seems essential. I recently talked to one of my good friends and admitted that I didn't always feel like phoning people due to not having the energy to put on the 'I'm fine thanks' face when I was actually feeling rubbish. When she said that I could be as honest with her as I needed to be -indeed- she would welcome it, this was like a release. Then I came across this piece on toxic positivity and it all started to come together. so thanks

Everyone is different in own circumstances.
I hope that in the future our trataments can be
The same for all. Currently the scientists are
Studying with mouses for vaccines of Covid 19.
And I hope that for us, for people with MS we
Will have our mouses that resolve our mistery, and
They will be fast in the vaccines, as now we have
Vaccines for Covid 19.

Hi Susan,
Thanks for reading the article and sharing your sentiment. You are appreciated. Best wishes to you.
Teresa

Hi Yvonne,

Thanks for sharing your truth! Your response touched my heart. I can relate to several points you made, most especially, looking in the mirror and discovering the culprit was often myself. I believe we have all been here a time or two. I try to occupy a positive stance on most occasions and have learned that living my truth while having the autonomy and courage to give a voice to my pain and discomfort is a necessity.

You are not an idiot at all. You are human and putting on facades are sometimes easier than honesty. I am happy to know that you've realized that you deserve to be honest with yourself and walk in your truth. I am thankful for the person in your life that was able to look beyond the surface and see that you were dismantling. I am also happy that you have a counselor whom you trust as you work on your most prized possession.....you!

You are a brave survivor and have truly encouraged me. Thank you for reading the article and for sharing your story. Keep going. Continue to touch lives and remember you aren't alone. Best wishes to you and yours.

Teresa

Hi Suzanne,
Thanks for reading the article and sharing your perspective. Of course you make sense, it is your truth! I am of the opinion that if someone runs out of my life because I've opened up to them, or because I express my pain and loss, they aren't meant to be there. I truly believe there is a distinction between pulling someone into your pain and a person who allows you to exist in yours for the process of healing.

Like you, I am optimistic. I have just defined the difference between optimism and toxic positivity. One is encouraging while the latter can stifle one's authenticity and their need to feel, reveal and heal.

I am happy to know that you are open to speaking to individuals and groups with similar experiences. In truth, we are never alone. Best wishes to you and thanks again for sharing your perspective.

Teresa

Hi Catherine,

Thank you for your reply! It touched me. I share your sentiment of occupying spaces of gratitude and optimism and truly believe that it's necessary is thriving and surviving chronic illness, and life in general. I am also grateful when those around me allow me to honor my truth in its entirety.

I am so happy you have a friend that understands. She has given you the comfort of knowing you can be honest with her and that she will support you.

You say that your life has become small. I hope you find fleeting moments of joy as you allow yourself to process all that you feel. I also want to say that in reading your response, your huge spirit is what resonated with me. Keep going. Best wishes to you and remember we are never truly alone.

Teresa

Hi Leila,

Thanks for sharing your thoughts. You are correct, everyone is different and our circumstances are diverse. I too hope for a future where access to treatment is equitable and effective. It is my hope that we will find a cure for MS in the near future. Be well and best wishes.

Teresa

Your article is spot-on as to how I am perceiving those around me most recently. I’m mad, angry, sad, frustrated and many days I don’t want anything to do with positivity! Thank you for articulating what I am feeling.

Thank you so much for this this article ❣. Very timely for me and I am so thankful to you for bringing this to our attention. ❤

I used to be 1 of those positive pushers, so I understand where they are coming from; they are uncomfortable, awkward and don't know the "right" things to say. Because I'm also 1 of those "but you look fine" people, I get it: it doesn't make sense. I only tell and talk to my inner circle people that I have MS and the hardships that go along with it. They understand and help where they can. They will make concessions for me (like choosing to do morning activities, rather than afternoon or night) but they never treat me differently. I had a Paster at church announce to the whole church that I had MS. That was a mess! So many people came up to me after that with pity on their face and comments like "I would never had known" "But you look fine" Some were actually upset that I hadn't mentioned it to them. Awkward! I did not, because I am a positive person and don't want the toxic positivity, the having to explain to them all that I feel and go through, unless there is some sort of benefit for them to know. I choose Inner circle, real relationships with real conversations where I can be me and be treated with love, respect, and understanding. I love my people!