LindsayI expect this post will be wildly unpopular, but I am going to say it anyway.
Stop comparing every illness to cancer.
The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as every newly diagnosed chronic illness patient will hear at some point, I was told those dreaded words which I have no doubt uttered in the past: “At least it’s not cancer.”
Cancer. The word itself sounds destructive. Hazardous. The kind of word we only dare whisper for fear it will set its sights on us next, and because voicing it aloud only reaffirms its power. It has become a curse word, an expletive. The “c-word”.
My illness is not terminal, and every single day of my life I am grateful for that. By reminding me that my illness is not cancer, you are trying to be uplifting. Reassuring. I get it, and I appreciate that. You are relieved I am not dying. I am, too. But when did cancer become the standard by which we judge every illness? When did we reduce every illness to two categories: cancer, and not cancer?
Suggesting that someone should be grateful they do not have cancer undermines the very real struggles they face with their illness. It implies that the excruciating pain, constant nausea, crushing fatigue, frightening memory loss, mobility impairment, and other symptoms are irrelevant, and all that matters is the name of the illness. And if the name is not “cancer”, it’s hardly worth discussing.
Telling me it’s not cancer quickly shuts the door on any open and transparent dialogue about my illness. How am I supposed to respond to that? How do I tell you I’m terrified when, hey, at least I don’t have cancer? Some chronic illnesses inflict the same low quality of life as terminal illnesses, just without a foreseeable end date. There is only so much pain and discomfort for so much time that one can endure.
When we begin to compare illnesses, we perpetuate a chronic illness community based on competition. My illness is better than cancer, but what about diabetes? Bipolar disorder? Congestive heart failure? Should I tell someone with the flu, “at least it’s not dysautonomia”?
Cancer is a horrible disease. We can all agree on that. The world will be a better place when we find a cure , but there are plenty of other awful illnesses out there as well, many of which can be as serious and devastating as cancer. If we reassure patients with noncancerous illnesses by reminding them they are fortunate not to have cancer, what do we say to someone diagnosed with cancer? “At least it’s not ALS”?
Comparing every illness to cancer also ignores the individual experience of each cancer patient. While we use the term ‘cancer’ to refer to the abnormal cell growth that has the potential to spread throughout the body, there are hundreds of different types of cancers, all with very different pathologies. Some cancers are easily treated if caught early, while others progress too rapidly to stop.
A pancreatic cancer patient has traveled a very different journey than my friend who had a cancerous mole removed, who walked a different road than my former co-worker who just passed from lung cancer. Which one is it you are glad that I am not? Is it really better to have a serious, life-altering but non-fatal illness than a treatable cancer that goes into remission? Individual experiences with such a prolific disease cannot be lumped into a single category. Let’s not devalue their battles by trying.
Fuck cancer. But, fuck the other illnesses, too.
I do not know the purpose of life, but suspect it must lie buried somewhere in the threads that weave a community together. We have to build a better community, where all patients are allowed to share their story. We begin by quietly listening.
If you are searching for something meaningful to say to a friend who was recently diagnosed with a chronic illness, there’s nothing wrong with simply stating, “I am so sorry you are going through this.”
Without mention of the c-word.
“Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage.
Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.” – Rainer Maria Rilke
Smell ya later.
– Linds
Powerful
thanks, Katie!
Brilliantly said Linds! I’ve lost count of the Doctors who have smiled at me and said “we found no tumour, isn’t that great news?”. Is it? Cos if my crippling pain were a tumour you’d cut it out, I’d have radio or chemo and there’s a chance I might then be pain free. But instead I face my whole life until I die in agony and no-one can even tell me why I’m in such pain.
Even my own Mum often says to me “your poor Aunt was in so much pain with her cancer”. And bless her she was before she died aged 79. But she had cancer for 2 years. I’ve been in pain every day for 39 years and will remain in pain every day for possibly another 30 years until I also die.
Cancer is usually a fairly short lived disease from which you either die or recover. Chronic illnesses can last a lifetime – decade of super-human suffering. Both need to be recognized. Jak x
yes! wonderfully stated, Jak! i hate to say it, but i think there are times when anyone with chronic pain wishes they had cancer. at least doctors would listen, instead of assuming we’re making it all up.
cancer is awful, and so many people suffer with it. really suffer. i just wish people realized lots of patients suffer just as much with other illnesses.
Wonderfully put, Lindsay! This needed to be said. I actually had a benign brain tumor last year and ALL I heard was “at least it’s not cancer.” Yeah, because that makes me feel so much better about the tumor growing inside my head. 😠
oh my gosh, i’m so sorry to hear about the brain tumor! how scary! like having a brain tumor isn’t bad enough, then you have to deal with insensitive remarks!
Great post Linds x
Thanks, Jo!
Brill. As always. <3
Thank you!
I’ve had leukemia. I’m diabetic. I’ve got autonomic neuropathy. Degenerative disc disorder, degenerating shoulders, hips, and knees…. they’re all invisible (except when I’m hobbling). If it helps any, when it is cancer, people run for the hills. They don’t know what to say, or how to really help. I totally understand what you’re saying- but I think humans can never really get it “right” when they haven’t actually dealt with something first hand. Remember their intent- not ‘the c-word’ … 😉 Consider each person who makes ANY comment that acknowledges that you have anything going on to be a plus… or acknowledges you at all. I’m pretty much alone, and hear nothing. I’ve got the crickets cheering me on. Hang in there. It’s not a competition- it’s all relative to what each person is going through at any given time. It might not get better- but at least the dysautonomia itself won’t directly kill any of us (avoid staircases when you get lightheaded 😉 ). But it can seem very lonely.
Are you reading my mind? So frinking true! I am sorry somtimes I wish it was just because I know A. I would maybe get better, or B. I would get to leave this place, sorry, if I seem ungrateful! My mother had the C-word and ALWAYS says I know I was there to, ahhhhh no you worn’t In 3 months she was better from her treatment and actully gained weight. Now shes on a cruise.Not to mention all the patience and support and understanding SHE got. I have not left my house other then to go to the 100 doctor appoinments in 4 years,I am in PAINNNNNNNNNN every day of my life! My in-sister in law says”well you must have some good days”! I am gonna stop while I cry….. no you dumb witch, I don’t.If you say you are jealous of somone else like the old lady who lives next door who has never been sick or in PAIN???? Other the a tooth ache, she says.Why? She’s (fat,selfish,incompationite, drinks, lazy) and didnt build up the good karma I thought I did all my life.Thats fair?? Ok yes I’m jealous, and I never thought say this but I just wish they WOULD get sick a least for a little while, so they would stop saying things like, maybe it not as bad as you think your just depressed.Anyway thanks for keeping it real!!! You are the only truthful person I have read, everyone else frinking suger coats everything.One more thing, tell every one to take thier medation and yoga and stick it up their asks!!!!!!!!
right?!! i love meditation and yoga, but….nope, still hasn’t cured me!