I’ve had eight surgeries and spent thousands on physiotherapy, acupuncture, chiropractors and talking therapies to help manage my pain (Picture: Punteha van Terheyden)
For eight hours I had been laying in bed with a heat pad on my abdomen, dosed up with codeine as my chronic endometriosis and sore hips left me exhausted and in pain.
My body was begging for some rest, but I was trying to get through work emails, desperately attempting to offset the guilt of feeling like a useless mum and wife as my partner, Andy, looked after our four-year-old daughter Millie.
Then an email hit my inbox that made my blood boil. It was a response to my out of office.
I always have one on that explains that I suffer with chronic pain and illness and am currently in a hell-flare.
It explains that my mobility, ability to sit up, sleep and mental health are all impacted, and asks those inquiring to bear with me if I’m slow to respond.
Usually, responses are kind, empathic and heartwarming. This one, however, was accusatory and entirely unwelcome.
It was a bilge of toxic positivity – the suggestion that, despite my situation, I should retain a positive mindset or outlook – that I wanted to drop-kick into oblivion.
She was a stranger who essentially told me that my pain was my fault. That my being ‘married’ to it would perpetuate the chronic pain cycle and I could change my situation if only I ‘wanted it’.
This is not why I put my out of office in place.
I share it not only to give myself some breathing room in the fast-paced journalism industry I’ve worked in for 13 years but also to de-stigmatise chronic illness and pain, which affects around half of Brits.
Sometimes, life is hard and s**t. It’s OK to allow ourselves to feel that
This person had shot into my inbox with the sting of a Portuguese man o’ war jellyfish.
It was toxic positivity of the highest order: self-serving and painfully ignorant. Even if it does come from a kind place, the idea that people should remain completely happy, regardless of their circumstances, is harmful and unhelpful to those on the receiving end.
For a stranger to presume to know me or how my mind and body work, my mentality, my beliefs, my knowledge of chronic pain and lay the blame squarely at my feet is cruel.
Sometimes, life is hard and s**t. It’s OK to allow ourselves to feel that. Having others deny or plaster over our difficulties with hollow positivity can become poison to our souls, inciting us to try – and fail – to feel positive, leaving us only with guilt and self-loathing.
Being treated with such ignorance makes me feel astounded that people can be this lacking in empathy, while also triggering a tumult of self-doubt and loathing.
Is this person actually right? Could I be doing more?
Sometimes, people don’t know how to respond to a person’s pain without hurting them more. They think they need to offer some advice or solution, whereas the person suffering might just need validation that their situation is hard – that acknowledgement of ‘no wonder you’re feeling this way’.
Examples of toxic positivity and why they are problematic include: when a woman suffers a miscarriage, being told ‘at least you know you can get pregnant’. It’s dismissive and tone-deaf.
If a person loses their partner, the ‘plenty of fish’ adage makes no difference when they want the one fish that’s no longer theirs.
Being unable to conceive and being told repeatedly ‘you can always adopt’ while undergoing IVF is futile and insulting.
I know about the latter from personal experience – it stung every single time.
After having Millie I was also repeatedly told positive stories of people who fell pregnant naturally after having an IVF baby, by people who were ignorant of the fact my partner and I have both female and male factor infertility.
We have zero chance of conceiving naturally and those cheerful anecdotes didn’t bring me any comfort.
I think some people love their own advice. They give it uninvited and unwanted to centre themselves in a person’s trauma or pain instead of actually listening, or trying to put themselves in another person’s shoes.
If I talk about my pain, I am not asking for a solution. I just am having a whinge like any normal person
When talking about my chronic pain, I’ve been told: ‘Don’t worry, you’ll be back to normal soon.’
They’re trying to make me feel better or give me some kind of hope but what they don’t see is that chronic pain doesn’t just miraculously go away or heal, and I’m not ever going back to ‘normal.’
This is my life and my body, as rubbish as it is, and I have to find ways of coping that do not involve being ‘normal’ or physically ‘able.’
And it’s not just strangers – I have experienced it from friends and family. The ones who fail to empathise are the ones I have locked off over the years and being rid of them has served me much better than putting up with their unhelpful comments.
Another good example of toxic positivity in action is people I don’t know offering me solutions to try without me asking: turmeric, CBD, yoga (SCREAM), Pilates.
They’re trying to be nice, I imagine, but I find it irritating because if I talk about my pain, I am not asking for a solution. I just am having a whinge like any normal person.
Putting me in a position where I have to say ‘no, it doesn’t work’, again and again makes me feel like a failure or seem like a difficult person when in reality, it just isn’t helpful. Unless I ask for it, or you’ve asked me if I want any ideas, just don’t offer.
The first step in being supportive in a positive way is acknowledging the hardship – ‘This sounds really hard, I’m so sorry’ – and then listening, or offering a friendly ear.
When you’re in a bad place, sometimes you can’t remember your coping strategies. A gentle nudge from a loved one can help you find your own hope and light.
But positivity turns toxic when people veer into a misguided attempt to shut down your feelings: ‘Oh come on, it could be worse!’ or ‘You have so much to be grateful for!’
It’s OK to be successful and feel alone. It’s valid to have a child but still feel sad about being unable to have a second baby. It’s valid to feel angry about being in pain all the time even when others are sadly ill or dying or worse off.
One situation doesn’t have to negate the other. Everybody is entitled to feel ‘negative’ emotions without being shamed or shutdown.
There is no way that you can fully understand a stranger’s situation, so to presume it can be cured simply by positive thinking is to diminish their lived experience.
I’ve had eight surgeries and spent thousands on physiotherapy, acupuncture, chiropractors and talking therapies to help manage my pain.
The reality is that no manner of wholehearted positivity will remove the severe endometriosis from my womb, bowel, cervix, and other organs, end the physical inflammation and swelling around my hip or revive the atrophied hip muscles that continue to work dysfunctionally and cause me further micro-injuries, pain and immobility.
This is how I’ve been made to feel bad too many times by people offering me unwarranted advice.
If faced with a person’s difficult circumstances, ditch the trite, meaningless, pukesome sunshiney words and use some real ones that will instead both acknowledge their pain and offer them compassion and comfort.
‘I’m so sorry you’re going through this.’
‘This sounds really hard.’
‘I’ll keep you in my prayers.’
‘You have every right to feel the way you do.’
‘Is there anything I can do to help?’
I, for one, have had enough of toxic positivity. The only joy I’ve experienced from it is turning it into a written piece. That kind of positivity I can get behind.