Note: This insightful guest post was written for I Told You I Was Sick by Mary Gutierrez of www.healthyeatingexperts.com. She had asked me if she could write a guest post, and, after looking at some of her articles (which mention the word ‘cure’) I asked if she would write a post about why the word ‘cure’ might be offensive to some people with chronic illness (spoonies). She readily agreed, and this piece is above and beyond my expectations. Thank you so much, Mary!
Disclaimer: These quotes, collected and arranged by Mary Gutierrez, do not necessarily reflect the opinion of I Told You I Was Sick. They are simply posted as written by their original and respective authors, and those individuals have chosen to remain anonymous. (All photos are stock photos for the purposes of illustrating the emotion of the quotes. They are not images of the people quoted.)
No, it does not mean you want to stay sick forever.
It’s just that…
You’re sick and tired of hearing “Have you tried this?”, “You should do that.”
It’s just that…
They don’t bother to know the whole story. That you HAVE tried X and Y already, and they have failed.
It’s just that…
They don’t realize or understand that you and your condition are like married (without your consent) and your condition is in it for the long haul.
Sound familiar? Is this you?
A Quick Story
In 2008, I started feeling dizzy so frequently and severely that it was interfering with my daily life. I underwent a battery of tests, but they did not find anything. Some doctors said it “seemed like” benign paroxysmal positional vertigo (BPPV). Some said it’s “probably” Meniere’s disease.
Frustrating, isn’t it?
When I met my 5th or 6th doctor (I lost count), I finally asked her the scary question – “Will this ever go away, like permanently?” She told me, “It may or it may not.” My heart sank.
It has been 10 years now, and it has not gone away just yet. I’ve had my high highs and low lows, but I’m still hopeful. I’ve learned to manage my symptoms and improve the quality of my life (this is a story for another day). But, I’m still in this battle that no one can see.
This is the reality of many spoonies. And for some, the ‘cure’ is still nowhere in sight.
Do Spoonies Really Hate The Word ‘Cure’?
I decided to ask some of my fellow spoonies to share their thoughts on what has been considered a controversial word in the spoonie community: Cure.
Quick Note: Every chronic illness and symptom is unique, and every person experiences them differently.
Here is what they had to say:
“I cannot speak for others. I do not hate the word “cure,” but it has no relevance for me, as my condition is genetic. What I have is treatment (for some things, anyway). I have flares, and better days, and worse days.” – MM
“Well, I don’t hate the word “cure”. But “management” is a better way to put it.” – KW
“I don’t. I’d LOVE nothing more than to rid myself of cancer. I’d take a cure all day long.” – Lucia
“I always speak in terms of “living with” my illness. I have fibromyalgia.” – DL
“I’m going to go out on a limb here and say something that will probably make some people angry. I feel I have a right to do so as I’ve been among their ranks for 10 years now.
There is a good portion of the chronic illness community (aka spoonies) that have so identified with their illnesses, so accepted that their lives will never improve and that health can’t be regained, that they are indignant if one even mentions that healing is possible. I believe that many of these people have so elevated the status of their condition within their soul such that they are (perhaps subconsciously) afraid of the thought of living in any other fashion. It’s a defense mechanism of sorts. After all, their ‘doctors’ have told them there is no cure. Most people are weak and, instead of standing up and fighting for their lives, they accept their diagnosis and all that comes with it. I do not think these are bad people, just misguided, uninformed, and massively failed by our healthcare system.
As far as what to say instead, I think “healing” may be a better term in that, like living, health is a journey.” – AC
“Hate? No, more like an inaccurate use of the word. As there is no cure for chronic illness.” – KM
“I’m a spoonie, but this is also caused by an underlying neurodegenerative disease called HD, which is currently incurable since finding the gene responsible 25 years ago. I don’t hate the word “cure”. Use it all the time in the HD community.” – KJ
“Simply, there is NO cure for autoimmune diseases, and anyone who says differently is full of shit and praying on vulnerable people, and any doctor will agree with that. Having said that, healing and improving one’s health is more than possible, after 6 years 90% bedridden with a cluster of AI’s when we treated my core issue …. which I figured out (not my doctors they gave up on me ever getting better)… I have been 80% my pre-illness self for over two years now, and other than chronic fatigue that kicks my ass daily, my disease flare-ups are manageable!” – RHT
“The word “cure” became disheartening because overnight fixes claiming to be cures never helped, some hurt. With that said, I started seeing a naturopathic doctor who had a lot of remedies that significantly helped me to the point that I felt it was basically a cure. I’m leery of the word itself, but not necessarily of the idea itself, if that makes any sense.”
I’m not really sure what word I would use, I think I just tend to say “improvement” as “recovery” makes me think substance abuse, “remission” makes me think of cancer, and “healing” makes me think of some magical white light (sounds crazy, I know). If I had to choose a word, it would probably be “improvement” or “remedy”. – AC
“My diagnosis is MS. I can walk, etc. but have trouble with fatigue, etc. I don’t like the word “cure”. It’s like every time someone has a disease, they tell you about something that can cure you. Turns me off.” – GH
“There are no cures for spoonies, you can improve symptoms but realistically not cure most of the diseases, so that would piss me off. I would say “healing” instead.” – EH
“There isn’t a “cure” for a chronic illness, especially autoimmune diseases. I’m not necessarily looking for a cure, so much as looking for a way to manage the symptoms that drive me up the wall. I’d prefer not to talk on the subject at all. Another thing I can’t stand is when people apologize for what you’re going through. I just went through that earlier this afternoon with a close friend. She didn’t ask about whether there’s a cure, though, so that was a nice surprise.” – LF
“Cures would be great, but by definition, they don’t exist for chronic illnesses. The thing that I hate is all the times people try to convince me they do exist, and I’m just doing something wrong.” – GL
“I guess it depends how the word is used. There are lots of things that aren’t cures which shouldn’t be called that. In my community for rare genetic bleeding disorders, we do use the word as doctors are working on gene therapy. That would qualify as a cure in that it works by changing the genetic code to remove the ‘faulty’ one causing the disease.
Personally, I try to manage my condition to the best of my ability, with whichever tools are available. Today that looks like one thing. If in 30 years that means a few injections to cure me, then I’m all for it.” – JL
“I don’t like it because everyone responds differently to treatment and when they claim that their treatment works for everyone it bothers me. When it doesn’t work for me, I feel like a failure. They could say, “This treatment has worked for many”. – TF – myfruitfulhome.com
“Remission. Most chronic illnesses have no “cure” and “remission” is the best we can hope for. And remission speaks of freedom from pain and symptoms without saying how this is achieved, as it can be in many ways.” – LC
“Because there is no cure…not yet …if there was, there would not be so many of us that have been sick for decades. What to say instead: It is encouraging that research has shown ME/CFS is a serious, disabling disease, but it is discouraging that research funding is SO limited and ineffective, medical treatment is still unavailable.” – PS
“I have narcolepsy, so as there is not the technology to replace brain cells yet, we have no cure. For our world, we focus on raising awareness as it’s not well known. So that diagnosis time can be brought down.
Although mine took 25 years. If people know about it being more than “that thing where you fall asleep”, they could get a faster diagnosis.” – HK
“Because there’s no cure for the illnesses I deal with. If anything, there is treatment. I personally feel for something to be considered a cure, it would have to get rid of the illness for over half of the people dealing with whatever illness. Also, oftentimes people claim there’s a “cure”, when it’s a treatment option and flexes on how effective it is with only some people going into some sort of remission” – AC
“Right after I was diagnosed, I went to a conference where David Lander (Squiggy from Laverne and Shirley) spoke. He said that he wasn’t focusing on a cure for his MS because he was concerned that his cure wouldn’t be everyone else’s cure. He was more focused on improving quality of life for as many MS patients as possible, and his words resonated with me.” – AESS
“I don’t hate the word, but when I hear “cure,” I associate it with either a scam (because there are many scams out there touting to cure all your diseases and they don’t do squat) or medical ignorance. I’m not saying people aren’t cured of things, as I’m sure many people are, but I’ve been given the crack-pot diagnosis of fibromyalgia which “has no cure” when I believe the “cure” would be for the traditional medical doctors to actually know how to get to the root of my health issues instead of just writing all my new symptoms off as fibromyalgia (which they have no clue how you get it in the 1st place, how to treat it, or certainly not how to cure it). Cure means it is all gone, done forever, never have to worry about it again – like when people are supernaturally healed – so I prefer words like “treatment” or “healing” because, in my limited experience, I can’t recall anyone ever being cured of anything, but know people who have either been healed or are in remission.” – KR
My Take (Mary Gutierrez)
Personally, I do not hate the word “cure” itself. For crying out loud, I want to be cured! I truly believe that I was permanently freed from the dark pit of anxiety disorder back in 2011. But with this mysterious, unidentified thing that gives me dizzy spells? If there’s a cure, I’d love to have it. By all means.
But, like my fellow spoonies, I get uncomfortable when someone tells me that I should try this or that because it can “cure” me. If they know my medical history, everything that I have tried, every pill that I have swallowed, or if they’ve been in a similar situation, then I’d listen. I assure you, I’ve done my homework and performed my due diligence. This is why most spoonies are like medical experts because we’ve done extensive research in regards to our conditions.
What about you? Do you hate the word “cure”? Why or why not? Is there another word that you’d like to hear instead?
Share with us in the comments below.