It can be challenging and scary to acknowledge and profess your vulnerability for all the world to see. Recently, I did just this, chronicling the worsening of my symptom of FND, and the impact that it has had on my mental health. I received many messages of support, especially from those within the chronic illness community. But, I also received comments such as “don’t worry so much, you’ll get through it,” “stay positive, it will soon pass“, and the cliched “get better soon.” While many see these as supportive and well-meaning messages of support, for those who are chronically ill, they are examples of toxic positivity.
What is Toxic Positivity?
But what it is toxic positivity? Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth.
"Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth." Share on XThe Idea That Positivity Is A Magical Cure Is Itself Toxic
For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness. And positivity alone can wondrously compel symptoms to disappear. Or worse, that surrendering to dark, gloomy thoughts is a sign of wanting to be ill.
"For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness." Share on XOf course, I would love for my Fairy Godmother to exist and cast away the debilitating symptoms that have wreaked havoc upon my body and life. But they do not exist, and I am never going to get better. I would love to get better. But sadly it’s unlikely ever to happen. It isn’t pessimism or negativity; it’s reality.
That does not mean; however, I oppose the idea of positivity. In my sanctuary, I have surrounded myself with positive and uplifting quotes printed on greeting cards and postcards. Or even ceramic decorative objects adorned with an inspirational quote or affirmation. On my Twitter and Instagram accounts, I often like to share inspirational and motivational quotes when they resonate. I love, therefore to surround myself and operate in positivity whenever I can.
The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure for my affliction. Still, I am sick.
"The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure. Still, I am sick." Share on XPositive, Yes, But Still Sick
No matter how cheerful or optimistic I feel, the pain is always present. Regardless of how buoyant I may be the trembling and weakness is still severe and debilitating. Despite feeling on cloud nine, the dizziness never dissipates. Becoming a Pollyanna isn’t going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is.
"Becoming a Pollyanna isn't going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is." Share on XBut the truth is that the ray of sunshine that positivity provides transforms into dark clouds caused by such persistent and debilitating symptoms. In reality, it is exceptionally challenging to cultivate positivity whilst in the throes of agonising pain; the type of agony that medications cannot subdue. It is hard to maintain positiveness when the world will not stop spinning; or when left bruised and injured after yet another fall. Being peppy and animated cannot suddenly compel my legs to stop trembling or make them any more robust. A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face.
"A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face." Share on XWhen I am experiencing a significant flare, I only possess enough energy to survive each day that it lasts. I am unable to find the strength to search for the ray of light that positivity radiates. And I feel every emotion under the sun bar the happy and positive ones. Instead, I am alone and isolated with only pain and suffering for company.
If Not Positive All The Time, Am I To Blame For My Continued Sickness?
And this loneliness and isolation are magnified when scrawling through social media only to be met with memes about the power of positive thinking or inspirational quotes. Such posts, and those who post them make me worry about expressing the reality of my feelings for fear of being judged or harassed for not being positive enough.
I am grappling not only with the disabling symptoms of a neurological disorder but also the guilt and shame that somehow I am the cause of my continued ill-health. If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing.
"If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing." Share on XAfter internalising the power of positivity for many years, I question whether I brought FND on myself. If only I meditated more or were more positive, would I be fully recovered, and not crying in agony? As such thoughts run through my head, it is easy to experience shame and feelings of incompetency at the idea that I have not tried hard enough to be positive.
It does not help me feel any better or more positive when sent cliched inspirational and positive memes of quotes. The words do not cure or even alleviate tormenting symptoms. Instead, it puts relentless pressure to be positive and cheerful, and feelings of inadequacy when failing to do so.
"It does not help me feel more positive when sent cliched inspirational quotes. The words do not cure tormenting symptoms. Instead, it puts relentless pressure to be positive and feelings of inadequacy when failing to do so." Share on XBut I Have Learnt That My Thoughts Do Not Influence How I Feel
At the coal face of living with chronic illness, I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience. Even if I could suppress the negative thoughts and feelings that arise from the challenges of living with a chronic illness, they would still exist, however. When struggling, I do not want force-feeding positive and inspirational messages, but for my feelings to be heard, accepted and validated.
"I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience." Share on XLiving with a chronic illness is demanding and challenging. A terrible thing is happening to us, so are we not allowed to feel negative about it?
Yes, positivity can make the experience easier to bear, but it is no magical cure.
But, by making it out that it is, is what turns positivity toxic.
"Yes, positivity can make the experience of living with a chronic illness easier to bear, but it is no magical cure. But by making it out that it is, is what turns positivity toxic." Share on X
6 Comments
“But the truth is that the ray of sunshine that positivity provides transforms into dark clouds caused by such persistent and debilitating symptoms.” – Absolutely. I mentioned toxic positivity in a post recently and started drafting a separate post on it but alas, I’ve not got around to finishing it because being too poorly plus too much to do = way behind. Positivity is good, as is being open-minded and seeing things from other perspectives, but it can only go so far. I personally find too much positivity can be incredibly damaging. Fantastic post, Rhiann, very well said! xx
It’s so frustrating when people do this. Similarly when people compare their lack of sleep for one night to your fatigue, etc…
I got into a fight on a Facebook group a couple of weeks ago as they were a group for an agency that provides PA’s for disabled people. They posted a meme saying the only disability is negativity, I was furious and commented as such, the owner now wants to meet me in the new year to discuss his social media and it seems they have just taken on a contractor that has no idea about disability and is just throwing flowery crap out xx
This is a topic I’ve been working on for a while, but haven’t gotten around to posting yet. It’s awesome to see someone else addressing the subject, because it’s such a huge problem. I’m dang tired of being told to be positive.
Absolutely spot on. I honestly think one of my favourite reasons for working from home now is no longer having to hide how I feel behind a stupid smile in the office. I got really sick of people giving me a sympathetic look and saying things like “I’m sure you’ll feel better tomorrow!”. Some people don’t seem to know what chronic means apparently.
I laughed and cried reading Toxic Positivity. This couldn’t be more true. Would I benefit from smiling in the morning? Yes, but it won’t cure my illness. My favorite has to be “drinking more water cures illness” It’s infuriating, and doubly so because so often the reaction is, well, you just don’t get it. I get it. I try to practice self care, but it is hurtful to be bludgeoned by self-care advice. Thank you so very much for this post.