Family and friends mean well. But sometimes their efforts to make us feel better actually make us feel worse. Here are the top three things not to say to a chronically ill person.
I struggled with the title of this post. I could have gone so many different directions! From the decidedly diplomatic “What Not to Say to Someone who is Chronically Ill” to the definitively assertive “How to Completely Alienate Your Chronically Ill Friend or Family Member in Three Easy Steps.”
Admittedly, I did settle on something sarcastic. But the title that felt most honest would have read something like this: “Want to get punched in the face? Just say this to someone with a chronic illness!”
My first intention was to make this an open letter to anyone who has a friend or family member who is coping with a chronic illness.
I’d love for family and friends of the chronically ill to be aware of how their well-intentioned words are perceived. There are so many things not to say – in fact, sometimes it might be better to say nothing than to say the wrong thing.
But I’d also like for those who are coping with chronic illness to know that it is perfectly okay to get a little (or a lot!) irritated by the cliche words and phrases that make us want to scream. (Except we don’t scream because we know we need to reserve our limited supply of energy and mental stamina for more useful purposes.)
Why we don’t always speak up when we’re offended
In some cases we may feel comfortable telling someone that their words – in spite of their good intentions – were offensive or hurtful. But often times we’re not comfortable saying so.
Why? Because we know that the person means well. And we don’t want to hurt their feelings by pointing out that what they’ve said actually makes us feel worse! Strange isn’t it? Sometimes we’re afraid to offend the people who have offended us!
So, dear reader, if you are chronically ill, know that you are not alone if you feel a little triggered by what people say to you. And if you’re a friend or family member of a chronically ill person I hope that this will help you understand why.
When I talk about chronic illness I’m speaking pretty broadly. All chronic illnesses are severe in their own ways and for a variety of reasons. But there are also severe illnesses that have “chronic” long-term and lasting impacts to our physical and emotional health (cancer is just one example). My picks for my list of things not to say applies to all of these.
My picks: three things not to say to a chronically ill person
I could easily make a top ten list of the various trite and annoying expressions that so many of us have heard. Over the years I’ve been the unwilling recipient of more than few of them.
But I’m going to focus on three things not to say. As a chronically ill person, these are the three that I’ve found to be the most difficult to hear. And one of them may surprise you.
1. Everything Happens for a Reason
Well, technically this isn’t entirely wrong. But only if you’re speaking from the standpoint of cause and effect.
Take, for example, the driver in the vehicle behind you who is texting and fails to see the traffic light change to red. He rear ends your vehicle as a result. Why did your vehicle get rear-ended? Because the fool behind you was paying attention to his phone instead of the road. That’s why. No one would have any difficulty understanding this logic.
Of course the cause and effect thing is rarely this clear when it comes to chronic or severe illness. Why did I develop a rare autoimmune disease that affects 0.02% of the population? We don’t really know. There’s a reason, of course, and given the complexity of the human body it’s not so simple to ferret out. But the reason is a scientific one – not a “universe-master-plan” reason.
Going back to car accident example, the logic seems to change when we shift focus from the vehicle (an object) to the driver (a human being).
So, let’s ask the question this way: Why did you sustain an injury that resulted in chronic pain and long-term impairment?
What’s the answer? I’ll give you a couple of guesses:
A. Because it’s part of the universe’s master plan (or God’s master plan) for you and it’s all for the best! Really, it is! Someday it will all make sense!
B. Because the fool behind you was paying attention to his phone instead of the road.
The problem with the “master plan” reason
It’s human to want to understand why. But apparently the real question is “Why me?” So when the answer isn’t so clear or when the effect is too difficult to contend with, people feel a need to fill in the blanks.
Why? Because it provides an answer that somehow assures a better outcome to be revealed at some point way down the road. When people say “everything happens for a reason” it lets them off the hook. After all, it’s not happening to them. It’s an easy out and it’s born of blind optimism (and a lack of knowing anything better to say). It’s the proverbial pat on the head accompanied by “there, there, it will all be okay…”
And it hurts because it trivializes how we feel and what we are experiencing physically and emotionally.
It’s also dangerous because it legitimizes baseless speculation at the expense of science. What if researchers and doctors took the view that the reason something happened was because of a “master plan”?
There’s a terrific article by Tom Koulopoulos, author, speaker and founder of Delphi Group. Tom writes about the myth of “Everything Happens for a Reason”. Actually he writes about letting go of it. The message is that we don’t need to find a reason. But we can create meaning:
We don’t own events or their reasons. We own what we do with them.Thomas Koulopoulos
How to respond if someone says this to you
So what should you do if someone says this to you? The best option is to be factual, which often shuts down the conversation. “I don’t know why I developed this condition – medically it’s very complex, but scientists continue to learn more about it. Unfortunately, this can happen to anyone.”
2. God Won’t Give You More Than You Can Handle
Please, please, please DO NOT SAY THIS TO ANYONE. Really, this one could easily be at the top of the list of things not to say. And if this has been said to you and offended you, I’m right there with you. There are two inherent problems with this expression.
The first is that not everyone believes in God. I’m not even sure if I should have capitalized the word because there are polytheistic-based religions as well as monotheistic ones, and I accept that people have differing views and practices. And I’m not going to make a judgment or take a side.
For context, I was born and raised Catholic and spent 12 years in catholic schools. My children spent 12 years in Lutheran schools. So this expression stands out to me because I heard it about a millionty-two times.
For those who do not believe in God, this expression seems ridiculous and is utterly meaningless. It would be akin to telling them that the tooth fairy is going to leave some magical healing dust under their pillow.
When I think about how an atheist might feel if they were on the receiving end of this expression, I think of Christopher Hitchens. Hitch was a contrarian. He was brilliant author, columnist and critic. He was also an ardent and outspoken anti-theist.
Hitchens died from esophageal cancer in 2011. Prior to his death, a legion of faithful folks across various religious persuasions offered to pray for him (for his health and his salvation, of course!), designating a specific day as “Everybody Pray for Hitchens Day”.
In Hitch’s typical sardonic style, he wrote, “I don’t mean to be churlish about any kind intentions, but when September 20 comes, please do not trouble deaf heaven with your bootless cries. Unless, of course, it makes you feel better.”
The problem with the “God” reason
Remember that last sentence from Hitch’s quote. Because it leads me to the second problem with this expression. When people say this they are implying that your pain and your suffering are justified because God knows that you are strong enough and can handle it.
And it makes them feel better because although they want to be in God’s good graces, they’re okay with not being “strong enough” to be dealt the lousy hand that you got.
As though you are so very special that He bestowed upon you a condition that has upended your life, impeded your ability to function, diminished your sense of self, and affected your relationships… because, hey, you’re tough and you can deal with it.
Bullshit. The truth is that life isn’t fair. The truth is that some people experience more pain, suffering and hardship than we can even begin to imagine.
To say these words to someone who has faith is to tell them that their God has inflicted upon them or at least permitted their pain and suffering because they can withstand it. Would any of us allow our “children” or anyone else to suffer like this if we had the power to stop it?
Similar to “everything happens for a reason” this marginalizes our illness by trying to attribute some noble reason that will encourage us to gratefully accept it.
How to respond if someone says this to you
Unless you’ve got the energy to engage in a deeper conversation about why this is not helpful and worse yet, offensive, keep it simple. How about: “I appreciate that you think I have the strength to deal with this, but I don’t believe that God allowed this to happen to me because I’m strong. When something difficult happens to you, you’ll find strength you didn’t know you had.”
3. What Did You Do To Bring This On?
This one is at the opposite end of the spectrum. Rather than assigning the universe or God with responsibility for your illness, this assigns all of the responsibility to you and your emotions, and that’s what places it firmly on my list of things not to say to someone who is chronically ill.
And yes, someone really said this to me. Years prior to being diagnosed with my autoimmune disease, I was diagnosed with an aggressive form of non-Hodgkin’s lymphoma, a blood cancer. You can find the story of my colorful health history here.
A friend of mine, sort of new-agey (is that a word)? actually asked me this question. I remember having absolutely no idea how to respond. I may have still been in the hospital, fresh off of a few days in the ICU because the 20 cm mass in my chest had collapsed a lung and contributed to dangerous blood clots requiring surgery.
She presented me with a book by Louise Hay, a motivational self-help author with a metaphysical perspective. The title was “You Can Heal Your Life”. The title certainly sounds helpful enough. To be fair, we probably all agree that stress can affect our health. But this book took that concept to the extreme, and with no scientific basis.
And I don’t know if my friend – whose intentions, I have no doubt, were all in the right place – actually read this book. But based on her question about “what did I do to bring this on” I’m going to assume that she had read it.
I did read the book. Then I donated it. Because damn, the message seemed to be that we are responsible for everything that befalls us in our lives. I vaguely remember some chart that listed diseases and conditions and the emotions that cause them. So in essence, I had caused my own cancer.
The problem with the “you must have done something to deserve this” reason
Good grief! Talk about kicking someone when they’re down. Tell them they are responsible for causing their own disease because of repressed emotions, self-hatred, grief, unresolved hurt, blah blah blah. And, if they can figure out how to corral and tame their emotional shortfalls they will heal!
Gee, how about two super-sized sides of self-blame and guilt to go along with the eight rounds of chemotherapy that had just been ordered for me? No thanks. That’s a lot of pressure to put on someone who’s sick.
I don’t need to point out why it’s toxic to make someone feel guilty for getting a serious illness.
But I will point out that the reason people do this is because it offers them a perceived sense of protection from meeting the same fate. A cloak of invisibility camouflaging them from disease and tragedy. Because if they can stave off these unhealthy emotions they won’t get sick.
How to respond if someone says this to you
Oh, I have lots of snarky ideas but I’ll keep them to myself. First of all, be aware that if someone really believes this he or she has most likely never had a real health crisis. The best response for this one might no response at all. It doesn’t deserve one.
So, I leave you with this: you’re entitled to feel frustrated and annoyed when well-meaning people say something that trivializes what you’re facing. But remember why they’re saying it – they want to be helpful in a situation where they feel helpless.
It doesn’t mean that you have to nod in agreement or smile with appreciation. If you’re up to saying how you really feel, say it! But if you’re not comfortable with that, that’s okay, too. Respond with some diplomacy and change the subject. Decide how much energy you’re willing to part with.
There are things not to say- and helpful things you can say instead
And if you’re talking with someone who is chronically ill and you don’t know what to say, that’s understandable. Sometimes an empathetic acknowledgement is enough: “I am so sorry that you are going through this. I can’t pretend to know exactly how you feel, but I can listen. What can I do to help you?”
Sometimes we just want emotional support and advice. Sometimes we just want to vent and aren’t looking for a solution. And sometimes we could use some help but are reluctant to ask. We just ask that you meet us where we are and accept us for who we are.
How about you? What’s on your list?