Toxic Positivity: Snowflake fluff, or a dangerous approach to healthcare?

I’m not usually one for neologisms, and can be heard scoffing when I hear terms like ‘mansplaining’ or ‘toxic masculinity’. Not because I don’t believe they exist or can have a very real impact on people’s lives, but because they’re just so… fashionable. The terminology itself quickly becomes nothing but click-bait, and more often than not, I scroll straight past the headlines with a tut and a huff about yet more pointless content. 

And so it was with ‘Toxic Positivity’. We’ve already established I’m an unintentionally positive person, so when I first heard this one I probably just muttered ‘what bollocks’ under my breath and moved on.

But then I had Obi.

Also apparently called ‘brightsiding’ <tut>, it turns out that there is indeed such a thing as Toxic Positivity <huff>. And it comes in a few different flavours – one more dangerous than the others…

1) Toxic Well-Meaning

Toxicity sounds so overwhelmingly negative, doesn’t it? But almost always, people guilty of toxic positivity have good intentions, and are just not sure what to say when they find out that your little darling isn’t quite the child parents-to-be dream of.

Ok, so the 16-year-old who told me that Obi being disabled “was nothing to be ashamed of” is possibly an exception to this rule, but for everyone else, it can be tough to think of something to say on the spot when they hear the bad news for the first time.

Pre-Obi, I would always – always – reflexively try to find something positive to say to anyone who shared uncomfortable news with me. The Strengths assessment I did at work calls it ‘WOO’. Another one for the Tut and Huff pile, I thought, until I read the blurb and begrudgingly realised that it had me absolutely nailed. It stands for ‘Winning Others Over’ and basically means that I will tell anyone anything about me, or something I might know just the tiniest thing about, to try to establish a connection.

Obviously, I do this with about as much intention as a sneeze, but just knowing it’s ‘a thing’ has made me aware of the trait, and of the ‘brightsiding’ I’m doubtless guilty of. I would always instinctively revert to saying nice positive or optimistic things to people, and entirely fail to realise that it’s okay for something to just be really, really crap.

Because then you can talk about it properly.

And that’s when we get to the more dangerous Toxicity – that which can be found in the healthcare profession.

2) Dangerously Optimistic Positivity

The NHS has a real problem here, and the more I speak to other people, the more I realise it’s endemic. There was a recent article in The Times by a journalist whose 12 year old son, like Obi, has Global Developmental Delays, but they just got a breakthrough genetic diagnosis. Sharing memories of the early days before anyone confirmed there was something wrong, he wrote “he seemed weak, floppy, but we thought it was because he didn’t have enough food and had been ill. The doctor agreed”.

That agreement with untrained parents searching for answers is the problem.

When Connie was a baby, she favoured sleep over eating, and it led to an obsessive approach to feeding from me (Patrick told me when we had Obi that “you breast-feeding Connie was the worst thing that ever happened to me”!), and after some time, a realisation that no health visitor or doctor ever proffered an opinion or made any proactively helpful suggestions, because they were too busy affirming my entirely uneducated theories.

They may as well have patted me on the head during my twice-weekly baby-clinic visits. I updated them on everything I was trying to get Connie to put on weight, and without fail, was told “it sounds like you’re doing the right thing”, and “yes, you’re right, she’s probably just <insert whatever excuse for her not eating I had come up with that day>”.

Only when I took her to a particularly egregious private paediatrician (Connie throwing up on his carpet as we left remains one of my all-time favourite reflux stories), did I discover that high-calorie formula was a thing, and I couldn’t believe it! A miracle cure to get extra calories into my tiny, starving baby!

And then I found out my GP and health visitors were only too aware of this stuff, but were so busy telling me what a great job I was doing that they didn’t even think to suggest it.

I wasn’t doing a great job (on feeding, at least – we were absolutely smashing bedtimes!), and I definitely didn’t know what I was talking about. I was begging for help and even asking for guidance on proportions of formula vs breastmilk, but they refused to give me anything, only reassuring me I was doing the right thing, despite all the evidence point the other way.

These are the only scenarios when I don’t want to be right, and don’t need to be right – I should have been helped, not patted on the head.

Obi’s problems were altogether different, but the challenge we faced with doctors and nurses (not healthcare visitors, we rejected their ‘help’ second time around!) was the same: ‘I’m sure he’ll be fine, it’s probably just X, Y or Z’.

His constant screaming for hours on end from 3 weeks old was ‘just colic’ (not a real thing).

His lack of smiling was ‘probably just discomfort from the reflux’.

He passed his eight week check with ‘strong muscles’ (that was actually peripheral hypertonia, an abnormal increase in tightness of muscle tone which causes rigidity), and the excuse we were a few days early so don’t worry about him not smiling yet.

Also, Great News: his genetic tests, taken because of his microcephaly (small head), all came back negative! It wasn’t even suggested that actually, those tests are only for the most ‘common’ conditions, and there could still be something else to look out for.

And the ventricular cysts in his brain and a bunch of other symptoms were ‘common in premature babies – don’t worry’.

I somehow didn’t join the dots on that one until about a year ago, when I realised that OF COURSE he had symptoms of premature babies – look how delayed he is! That didn’t start the day he was born, so despite being full-term… he was fundamentally born before he was ready – thank G-d all his organs were developed (apart from the brain, of course, which is a pretty major one to be playing catch-up…). But no-one acknowledged that possibility – or any other – until that day the paediatrician tried to send me flying through the window with his confirmation that Obi was definitely showing signs of delayed development.

It meant we were completely unprepared for the bad news, and the ‘reassuring’ optimism of healthcare professionals was incredibly unhelpful, and borderline dangerous.

It shouldn’t have come as a shock to us that Obi was delayed; we knew he was missing milestones and that there was something going on, but we still had hope it was temporary or not a big deal, because that was what everyone had told us, to try to make us feel okay in the moment.

Whenever we talked about his progress or – again – offered our own theories on what he was doing and why, we were agreed with. Being well-spoken and vaguely eloquent seems to mean that professionals believe you know what the hell you’re talking about, so just agree with anything you say. A familiar feeling with our second child, but one that at the time, we didn’t realise was part of a pattern.

It was only when Obi’s delays were confirmed that anything really changed, and only when we met his neurologist that we started to have our expectations well and truly (brutally, but rightly) set about what the future might hold.

I know now why well-meaning toxic-positivity that presents as ‘my cousin’s husband’s best friend was told their kid wouldn’t walk and he beat the odds!’ or ‘my son’s classmate’s sister didn’t speak until they were in their teens, but look at her now!’ etc. is so common, and it’s because those families had professionals who knew it was better to be fore-warned about the possible worst-case scenarios, in order to be fore-armed.

Expectation setting is something that the NHS must get better at – it’s dangerous to let parents with no medical training set the path of care for their children.

3) Positively unhelpful

Quite often, people put in awkward positions by bad news offer unsolicited ‘answers’ to put themselves at ease, perhaps even thinking they’re being helpful. Their intent is probably not malicious, but in my experience, these people are the WORST, and the ones most likely to send me into a blinding rage.

“Answers”, especially when one’s child is undiagnosed so there aren’t that many of them around, are not always helpful. Or in fact always answers. Twice in very quick succession I was blamed for Obi’s condition because I’d had the Covid vaccine. How helpful! What a supremely constructive suggestion! So, I should… do what now? Feel guilty? Sue someone? If you’re a conspiracy theorist, it’s probably best to keep the conspiracies to yourself in these situations…

So what can you say?!

Oh anything you like – someone would have to be a bit of a knob to make you feel bad for saying something misguided, but intended to be nice, right?! And you shouldn’t apologise for having your own problems, either. What’s really, really crap for you, might not seem like it can even compare to what’s really, really crap for me, but it’s not a competition (I like to think I’d win if it were), and I’ve come to realise that our capacity for crap expands with our situation.

So, while you may think your crap sounds less serious crap than mine, it’s the most crap you’ve ever had to deal with, so I bet it’s just as awful for you, and that’s okay! It’s only now – after going through endless “I’m sure everything will work out!” or “he’ll catch up” ‘toxic positivity’ – that I realise in so many situations, an ‘urgh, that sounds really hard, I’m sorry’, is what’s really appreciated by most people, whatever the level of crap.

Quite often adding a ‘how are you doing?’ at the end of it works well, but only if you’re actually prepared to listen to the answer… but that’s another story for another day!

What We’ve Learnt:

1. Ask for help, until they give it – or go elsewhere: You don’t know what you’re doing, and that’s okay. You might know your child better than anyone else, but do you know what’s on page 943 of Gray’s Anatomy?!

   
   

2. Shake it off and give nice people a break: It’s really tough to know what to say, sometimes. The ‘smile and nod’ play can be very helpful, here, though! And having experience of people who have had years to say something but failed to say anything, I’ll take well-intentioned toxic positivity any day of the week.

   
   

3. Expectation setting is vital: We’ve probably drunk more bottles of champagne celebrating the little things Obi’s achieved against what we were warned might be the worst case, that I probably owe his neurologist some by now. Better to have be given an honest view to help you prepare for the future, than be lulled into a false sense of security.