How do we use words to show support for our loved ones navigating chronic health conditions?
Image Description: A hand holds a folded A5 greeting card, with an illustration of two acrobats wearing medical garb and reads 'Get Well Soon'.
"Get Well Soon" is an expression of hope that the listener will recover from their illness or injury. In acute situations, like being under the weather or having tonsillitis, it's the tried and true! There are entire Hallmark card racks devoted to it! It's so polite and well-intended! But sometimes - it can be a big misfire.
"Get Well Soon" has always been a tongue-in-cheek title for us, chosen because it falls short for folks with chronic health conditions.
"Get Well Soon" can sound pretty hollow to someone who isn't able to get well soon. It might sound invalidating, like the giver is not truly seeing or listening to the listener's experience: for someone with chronic pain or illness, what being 'well' means is constantly shifting. Asking them to be 'well' might be an uncomfortable or impossible task.
Yet, we are socialised to make gestures to help people feel better. We are taught to show that we care with gestures or words to help 'fix' things. Of course, we want our loved ones to feel 'better'. But how might those words make someone feel who can't feel better?
Alaina Leary found that being told "Get Well Soon" out of politeness made it difficult to navigate her Elhers' Danlos Syndrome. She acknowledges that we've been socialised to say "Get well soon!" out of politeness, or "feel better!" to show that we care. When Leary told her friends about her diagnosis, she'd often get told "I hope you feel better" - but her reality was far from that: EDS is a chronic, incurable pain condition. From childhood, she had internalised the "get well" script so deeply that she struggled to accept that she was facing a lifelong condition, and hoped she would magically one day 'get well' again. Unlearning the 'get well' script was a big part of her acceptance and wellbeing journey.
So if the usual niceties don't help in these instances, should we overhaul the script?
Consider the nicety of asking people "How are you?" during COVID-19. Ashley Fetters wrote a piece for the Atlantic explaining that in a time where the coronavirus is effecting us all differently in different measures, it's time to reconsider what makes a polite, standard two-person greeting. In a time where our financial and job security, housing, our health and loved ones' health risks, social connection, our futures, travel and concept of normality have been thrown into the washer, "How are you?" is actually not such a nice question to answer.
Fetters reflects:
Asking “How are you?” out of politeness during a pandemic is like asking “Have you eaten yet?” during a famine: Not only does the question draw all involved parties’ attention to the terrible circumstances at hand, but the expectation of a polite response negates the possibility of an actually informative answer.
Just because it's a well-intended norm, doesn't mean it works in every instance.
Maybe it's my resistance to the word "soon" and the way that it reads like a task, or that there's a timeline attached, but "Get well soon!" doesn't always fit the bill when I tell people about my endometriosis diagnosis. While I sincerely appreciate the care and support, it can sometimes put me in a difficult position if/when I'm struggling with the reality that I may not 'feel better' - as Fetter says, the expectation of a polite response ("Thank you!") negates the possibility of an honest one ("Actually, I might not because it's incurable").
I recently opened up this conversation in a some online endometriosis support groups. Do you like hearing 'Get Well Soon'?
It was a really cool opportunity to hear people's different thoughts. Some folks loved 'Get Well Soon' and said that hearing it from friends and loved ones during a flare (a time period of acute pain from endo symptoms) is what gets them through - the reminder that they are going to get better, and this bad episode will pass. Some folks felt differently, saying that when they hear "Hope you're feeling better!" from employers, it put them in Fetter's polite-dishonest jam ("I want to tell my boss 'I might feel better now but it's incurable and it will happen again, but I know it'll make them uncomfortable in a professional environment, so it worries me about how to respond").
My key takeaway from the conversation was that whether 'Get Well Soon' helps is very dependent on the person. For some, if friends and loved ones offer the script in acute situations like flares while understanding that 'well' is constantly shifting, it can be loving and supportive: it might help to remind us of better days. But if bosses or acquaintances offer it, or even loved ones that don't understand, it can create fears of misunderstanding or stigma when you can't 'get well'; it can also place the burden of educating that person about your health, or risk re-traumatising over incurable symptoms.
For another instance, for friends with Elhers Danlos Syndrome like Leary (a genetic connective tissue disorder often resulting in dislocations, excessive bruising, compromised immune systems and slow recoveries), telling them to "Get Well Soon" after an injury is a big improbability and might accidentally make them feel worse, anxious, or pressured about their slower-than-normal recovery period.
So what can we say in lieu of the usual social script, to show our friends with chronic conditions that we love and support them in times of need? What can we say when we're first told about a friend's diagnosis with a lifelong condition?
I challenge you to rethink offering a"Get Well Soon" or a "Feel better soon!" out of politeness.
I want to help the community find words that show that we still have hope and support for the listener, even on days where you can't be 'well'. Find reassurance that 'wellness' doesn't denote someone's worth. I suggest it starts with listening. I loved this in Leary's piece:
Normalize asking the question: “How can I support you right now?” And check in about what approach makes the most sense in a given moment. “Would you like me to just listen? Do you want me to empathize? Are you looking for advice? Would it help if I were also mad about the same things you are?”
Taking time to understand someone's experience will help to guide us in how to best respond and show up for them. Everyone experiences chronic pain and illness differently.
If "Get Well Soon" makes you feel better, that's so great! Bless you with bountiful Hallmark cards and helium balloons (and our merchandise). However, we need to champion ongoing listening to our chronic pain and illness pals to better understand why this well-intentioned script often falls short of actually showing our care and support.
I'm interested to hear from you, from friends, from community - what do you love hearing that makes you feel supported in bumpy health times?
This is going to be basis of an exciting new project development with Next Stage Counselling aiming to create new tools for allyship, empathy-building and awareness for the chronic pain and illness community. We invite you to email us at getwellcircus@gmail.com with your thoughts on words that show genuine support.