Chronic illnesses can be so diverse, complex, and confusing that it should be difficult to find a universal experience.
However, thanks to the notorious phrase “have you tried yoga?” and its seemingly infinite variations, we as chronically ill people have all shared the universal experience of receiving completely unsolicited advice on how to “cure” our illnesses.
These seemingly well-intentioned suggestions can come from complete strangers at the grocery store, very loose acquaintances at school or work, or even from your closest friends and family.
No matter who they are, or where they came from, the second they know about your chronic illness they immediately transform into the Absolute Expert Authority on exactly what you need to do to cure your chronic illness.
Forget med school, white coats, and stethoscopes – the real experts are speaking.
Their qualifications? Don’t worry about it!
Regardless of who they are and what they know about you, they come armed with one hyper-specific, magic bullet remedy that is guaranteed to Completely Fix And Cure You If You Just Commit And Do It Right.
They see the Random Woman With Unexplainable Knee Brace, That Kid With Arthritis Who Is Definitely Too Young To Have It, and That Weird Guy Who Walks Funny and spring into action with their groundbreaking, medically proven, undeniably effective, sure to work cures of turmeric, turmeric and black pepper, swimming, yoga, Pilates, mindfulness, and losing weight.
How grateful we must be, how cured we must be, how Not Disabled we must all be by now, thanks to these well-intentioned saviors. Right?
Wrong!
Regardless of the reasoning and intentions behind offering unsolicited advice, we as a society need to knock it off for four main reasons:
One: We do not know these people!
Two: We do not know their illnesses!
Three: We do not know their lives!
And most importantly, Four: We need to stop trying to cure them!
As I have humored countless recommendations, humor me as I explore these four reasons a little further.
(Let’s be so real with ourselves, if you’re reading this you probably already know better than to offer unsolicited advice to anyone – but let’s just give it a go anyways!)
Reason #1: You Do Not Know This Person
This reason goes out to all the strangers who insist they Know What Is Best For Us – “Us” being everyone, or just specifically you (and no, I can’t tell which one is worse).
Innocent, well-intentioned, sympathetic strangers – please ask yourself, why do you feel qualified to tell someone else how to live their life? How to manage their illness? How to cope with pain?
If you really reflect on why you’re offering unsolicited advice to the chronically ill, you most likely won’t find the sympathy you thought you had – you’ll just find pity.
There is an incredibly long and continuing history of non-disabled and non-chronically ill people insisting that they are the experts on disability and chronic illness.
And while this largely applies to doctors and service providers, you’ve been swept up in it – most likely, without even recognizing it!
Can you imagine how patronizing it is to be told by someone without lived experience how we are supposed to act, think, and feel?
Can you imagine how belittling it is, when someone believes you don’t know what is best for yourself?
And can you imagine how exhausting it is, kindly pretending to accept your advice that we know isn’t going to work for us?
(Do me a favour, and try to fight that urge to ask “but how do you know it isn’t going to work?”)
Yes, we appreciate you want to help us. But ask yourself why you believe we need to be helped – why you believe there is something wrong about us.
Reason #2: You Do Not Know Their Illness
This reason is for those among us who have been possessed by the Spirit of Medical Excellence and Supreme Knowledge the second they saw someone existing outside of what they believe to be the norm – despite a complete lack of medical qualifications.
Chronic illness is complex illness.
And because it can be so complex and confusing, some people are desperate to whittle it down into something simple, easy to understand – and curable.
And I really do believe people choose to oversimplify chronic illness because they’re scared, because chronic illness is inherently not easily understandable.
And I think this is something that we as chronically ill people could do better to speak more on. To share that we’re scared and confused, too.
That it’s scary and confusing to not understand what’s going on in your own body, and to not know what to do to fix it.
That it is weird that our conditions can come and go, flare and enter remission, and look different from day to day.
That we don’t actually fully understand what’s going on ourselves.
However, if we, the people with the chronic illnesses, don’t know what’s going on – those without them definitely don’t know either.
Now, if the emotional appeal didn’t get you – let me try with two examples.
The first is for those who insist they understand the complexities of chronic illness, and are still qualified to provide advice on cures, treatments, and symptom management:
Before I even reached age 18, I had microdosed chemotherapy, done a month’s worth of steroids, and regularly injected myself with white blood cells taken from chinese hamsters’ ovaries.
Even with advanced scientific breakthroughs, medical professionals, and intense treatments – I still had arthritis. The experts could not – and still have not – come up with a cure.
If the experts can’t cure me, you definitely can’t cure me either.
If chemo, steroids, and biologics didn’t scratch me – turmeric isn’t going to do what they couldn’t. If it could, Big Pharma would have already monopolized it.
For those who insist chronic illness is fairly straightforward, easy to understand, and even easier to treat:
For six weeks, seemingly out of nowhere, I was getting violently ill nearly every day. I couldn’t keep food down. I was ditching work and school because I felt so sick.
I became convinced I had developed a new, bonus inflammatory disease.
Do you know it actually was? (No, you don’t. Stop that.) Sun-dried tomatoes.
I had developed an intolerance to sun-dried tomatoes because of my fibromyalgia meds – which are literally just low-dose anti-depressants. Microdosing anti-depressants made me intolerant to sun-dried tomatoes.
Sure, chronic illness can appear simple.
And I would say sun-dried tomatoes are a fairly simple food.
But we are not working in a simple, straightforward environment.
Simple things become very complicated, very quickly.
If you haven’t caught on yet, there is a LOT going on with my body.
It’s like a moving jigsaw puzzle, where the pieces are constantly changing shape. And it’s also in 3D.
And you’re putting it together in zero gravity.
And you’re probably in a murky lake filled with piranhas.
And sharks.
But if you just want to see it as a 24-piece puzzle, go for it!
Don’t let the piranhas bite you on the way out.
Or the sun-dried tomatoes.
Reason #3: You Do Not Know Their Lives
This reason is for those who ambitiously aim to make the world in their image, who truly believe that everyone could be perfect if only they acted exactly like them.
These people often take great care of themselves and (dare I say, obnoxiously) reap the benefits, leading to an unwavering belief in Their Specific Cure That Will Help Everyone Ever.
They often live by an “if I can do it, you can do it” attitude – and can even come from our own chronically ill ranks.
A devastating betrayal (not the doing well part, the going from receiving to giving unsolicited advice.)
This reason is most frequently invoked by unsolicited advice to exercise – yoga, swimming, Pilates, cardio, you name it.
And while these activities can be helpful, The Proponents aggressively push a one-size fits all model that will shame you if you don’t literally get with the program.
And getting with this program can be incredibly hard, for so many different reasons.
(The Proponent’s excuse alarm is probably going off really hard right now. Breathe. Especially if you’re trying to make me do yoga.)
As chronically ill people, so much of our time is already consumed with the invisible administrative work of having a disability (appointments, para-transit, navigating support programs) – and a lot of us are working multiple part-time, unpredictable jobs to make ends meet.
This leaves very little time left to specifically get exercise in.
Most of us also deal with chronic pain and fatigue that absorbs so much of our energy!
Spoon theory literally exists just to explain how excessively exhausting “normal” tasks are for us – for example, while taking a shower is one spoon (unit of energy) for a “regular” person, it could be five spoons (units of energy) for a chronically ill person!
On top of this increased need for spoons, we often start with less spoons than non-chronically ill people.
(For some reason the spoons in a fishbowl, so I’m gonna leave the metaphor here.)
The point is, so many of us don’t even have the time or energy for our daily tasks – let alone for an additional, energy-intensive task like exercise!
Here, the Proponent will either get very angry with you, or start clamoring to explain how exercise will reduce pain and increase energy in the long run.
Proponent, you have a point. (Got you there, huh?)
But unfortunately, many chronically ill people genuinely do not have the time and energy to immediately spare, even when they understand exercise could help them in the long-term.
There’s a great example about winter boots when explaining the economics of poverty that might help break through to the Proponents among us:
When you’re at a low, fixed income, you have to buy the cheap winter boots knowing it only lasts one winter – because that’s all you can afford.
(No Proponent, you can’t take out a loan! The bank doesn’t care about you!)
But over time, you end up spending so much more on cheap boots every year, than if you just bought the well-made expensive ones in the first place.
But that’s the economics of poverty – you end up paying more in the long-run, because you can’t afford large, up-front costs.
Chronic fatigue is energy poverty. The good quality expensive boots are exercise. Hopefully you’re starting to get the picture.
Reason #4: You Should Not Want to Eradicate Disability
The most important reason not to give unsolicited advice to chronically ill people, is because you shouldn’t want to cure them.
Most people know not to offer unsolicited advice to strangers, but I think a lot of us struggle with this idea that we shouldn’t want to cure those in pain.
That it’s okay people are in pain.
And it’s something I struggled with personally for a long time.
Do I want my joint pain and chronic fatigue to go away? Obviously!
But, that’s just not going to happen. Womp womp.
I have made my peace with being chronically ill, with being disabled.
My favourite definition of disability sees it as a naturally occurring feature of human diversity.
Disability is as natural as the way some animals walk on four paws while others walk on two.
And when I see disability in that greater context, I understand that there is nothing wrong with me.
That I don’t need to be cured, or fixed – to be okay.
That I, like everyone else – disabled or not – has inherent value and worth.
We also need to be incredibly mindful of why we put so much emphasis on curing chronic illness, rather than managing it.
And when we choose to advocate for a cure, we need to be incredibly mindful that we are not contributing to possible eugenic practices such as gene editing and genetic testing designed to eliminate disability.
But that is a very big blog for another day!
Speed Round
Alright. If the four reasons didn’t get through to you and you’re still just itching to cure me – let me entertain you.
Have you tried turmeric?
Yes! I love turmeric and have incorporated it into some delicious plant-based dishes. Great spice, but didn’t do anything for my arthritis.
Well, that’s because you didn’t try it with black pepper.
What is this, amateur hour? Have you ever cooked anything in your life? I promise you, there was plenty of black pepper. I still have joint pain though.
Fine – but have you eliminated inflammatory foods?
With an eating disorder history? You really want to encourage good elimination? Are you sure about that? Because it didn’t go too well last time.
Okay, okay. No more food recommendations. But what about –
Yoga?
How did you know I was going to say yoga?
Lucky guess. And experience.
You will be pleased to know that I love yoga – especially for waking up and soothing stiff joints. I’ve been doing yoga for years, I’m very happy with my form and practice – and I still have arthritis.
Well, what about Pilates?
Girl, that’s literally just yoga with more breathwork and strength building. Are you running out of ideas?
A little bit. What about swimming, isn’t that supposed to help?
Swimming is definitely an arthritis friendly exercise given its low joint impact – it won’t cure inflammation or stop joint pain though.
God! It’s like you’re not even trying to get better! You dismiss all the cures!
I’ve incorporated turmeric, supplements, strength-training, cardio, yoga, AND pilates into my life. I’ve just done it in a healthy, balanced way that suits my lifestyle and illness – and in a way that doesn’t align with your completely unrealistic expectations that one activity alone done at an extreme and excessive intensity will outright cure me.
Why are you so mad? I’m literally just trying to help you!
But why are you trying to help? Especially when I didn’t ask for it?
I can appreciate you wanting the best for me, but I need you to trust that I know what is best for myself.
And I know that there is nothing wrong with me – just with you, and how you choose to view disability.