"He's A Fighter!" Medical Words That Hurt
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- Опубликовано: 5 фев 2025
- [Medlife Mini] Some thoughts about the words we use in medicine, after reading about Jeff Bridges' lymphoma diagnosis and Ed Yong's superb article about "being strong" when it comes to illness.
There are some archaic offensive terms in medicine, there are other words that are part of a long-standing culture of dark humour - this video is about neither. It's about terms that fly under the radar, that we use on a regular basis as actual medical diagnoses.
It was recorded on the morning of Saturday 24th October without much planning - there are loads more I could've mentioned, especially within mental health. But these were just a few that came to mind.
Link to Ed Yong's article: www.theatlanti...
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Another word that hurts: vlog. Use it at your peril.
Whatever you say, mister vlogging youtube personality!
Vlogging mid run boi. Pro league
Hmm. I have asthma and major depression.
I basically need to force myself to do physical exercise to help both. I NEVER feel like exercise or desire to exercise, only the degree of how much I don't want to varies.
...It's more Sisyphean in nature. I get to push the d*mn rock up the hill every day.
miscarriage is the worst. really dropped that ball.
If we're starting a list, can we please add the word phlegm to it?
Only a doctor could make his earphones look like a stethoscope
Electronic stethoscope.
My EMT class instructor (who is a paramedic) actually somehow manages to wear his earphones **in his ears** in a way that makes it look like a stethoscope, it's absolutely bizarre.
This had me laughing!
What if you didn't know he was a doctor?
You're right
The Onion did a wonderful interview with a man who courageously refused to accept that he had cancer.
@@xX_isopod_Xx That ended about as expected
Did you hear the latest 'The Topical' about how US employers are now offering 'paternity test leave' so they can go on Maury and find out if the baby is his? It's quintessential The Onion. Here's a link ruclips.net/video/X_fW8LPJJeo/видео.html
Here's another one you might like ruclips.net/video/o0Xvcw6x0Jk/видео.html
I once read a story about how an old man had died but showed up for meals over a few days until his family consulted with an old witch and they followed her advice to lay out black table napkins at meals. The old corpse finally noticed his maggots against the napkin, went upstairs and lay down stiff.
@@janosk8392 Gross. I think I may have seen this as an adaptation, on Tales Of The Darkside. A casual encounter one night, just hitting the button on the remote.
"I'm not a doctor, but I guess that when you die, the cancer dies with you at the same moment. I wouldn't call that a loss. It's a draw."
Norm McDonald, the best comedian ever, who recently had a draw with his cancer after a quiet fight of 9 years (he told the joke while sick)
Human cancer mostly doesn't win, but canine transmissible venereal tumor and tasmanian devil facial tumor have both outlived the animals they first arose in, and you could reasonably argue that HeLa cells defeated Henrietta Lacks.
As a long time sufferer of mental illness - the one that gets me is "help is always available", when in fact that is not true.
I second this so hard. Most of the time, the scenario for me is "health is sometimes available, usually when you don't actually need it and almost always the completely wrong kind"
Or more likely "help is available.... In about 2 or 3 months from when you actually needed it"
@@restrictedmilk Or "help is available, but in order to receive it, you have to do things you cannot actually do due to the thing you need help for in the first place"
Or "help is available, but we won't tell you where and no one who should know more has any clue whatsoever"
@@dean7301 oh yes! I've run into those before too!
"help is always available, as long as you can afford it"
I have had metastatic breast cancer for 27 years. I've never gone into "remission" but my oncologist has stopped treatments, periodically, when a treatment started feeding rather than hindering the growth and spread of the cancer. Fortunately, new treatments keep being developed so I've managed to survive far longer then anyone ever expected in their wildest dreams. And I've definitely been a "noncompliant" patient when my oncologist wanted to run tests to see how the cancer was "progressing" but had no treatment plan to offer if the cancer had spread to yet another area. I view my efforts to control the cancer as an epic adventure that offers lots of opportunities for personal growth. No matter what the final outcome is, I win because I've made major, positive changes to my life.
With cancer, you're not a combatant, you're the battlefield.
You are actually both as well as a scientist studying how best to take care of yourself, like Yours Truly: 3 ½ year survivor of breast cancer. It was a rough ride.
extremely well put.
I'm mesmerized by the triangles in the background.
I know. Can't stop staring at them.
Same
Stared at them for a solid 5 minutes
It was probably intentional
illuminati
Oh boy, obstetrics could really do with updating a lot of it’s terminology. Telling someone who has just lost a pregnancy that they’ve suffered a “spontaneous abortion” really puts the cherry on the less-than-splendid day they are already having.
Yes - that’s another good example of something which can be taken so differently by doctor and patient. I recall reading about a woman who had a miscarriage reading her discharge papers that she’d had a spontaneous abortion and being extremely upset. Even miscarriage implies it was the mother’s fault in some way, like ‘mistake’.
It's interesting how words effect people, I saw a video where someone talked about the negatives that come with miscarriage and suggested spontaneous abortion instead. Which to me would be waaay worse.
All depends, if they were agonizing over the decision to have an abortion, a "spontaneous abortion" may be a soothing balm to their tortured mind. This is why medical language needs to be precise and unambiguous, how that language is PRESENTED to people needs to be empathetic and informative.
@@Uhlbelk that is such a perfect way of thinking about it - the language must be unambiguous and informative but must be framed empathetically and informatively....damn you've just summed up a huge part of my day job so eloquently, I might have to write that and stick it on my wall somewhere!
@@MedlifeCrisis it must be a mine-field to deal with birth outcomes since either could be desirable to the patient for different reasons. I hope that clinicians always get time to discuss the patient objectives as assumption could lead to massive upset.
On the point about 'fighting' talk, severe orthopaedic surgery procedures and outcomes do require long term psychological management in my personal experience. So it's horses for courses, outside a terminal prognosis...
Thanks for though provoking content as ever.
A friend of mine died of cancer when he was 30. I remember he saying that "he had to be strong", but eventually he felt "he wasn't strong enough". That was unfairly harsh on himself.
You're the one who decided to use value attributing words to describe his condition rather than just factual ones, so maybe you're the one who made him think in these terms. Something to think about
@@mellie4174What a strange thing to say to a man who lost his mate. Maybe try to understand what you've read before jumping to conclusions.
@@mellie4174🍅🍅 you suck 🍅
@@mellie4174 the commenter said their friend was the one who described himself as having to be strong (their wording makes this confusing, but "he saying" clearly means "him saying").
My mother had pancreatic cancer, an awful diagnosis. Saying she “fought hard but the cancer won” is awful to me. Her death wasn’t about how hard she “fought,” it’s that we don’t have good treatments for pancreatic cancer.
I have both incurable and genetic disorders. Many people tell those of us with chronic, incurable conditions that they are rooting for us and we are strong and can fight it, but when we keep being sick, eventually they get frustrated and tired of it. I’ve even had doctors tell me I’m not “trying hard enough” which is the opposite of helpful. The times I have tried to “fight” and keep pushing myself have made me substantially worse. Managing my conditions takes work and effort, but part of that is reducing stress, not increasing it. I don’t want to have to “fight” my body for the rest of my life, that’s miserable and untenable.
There are cures for most diseases, even Alzheimer. The elites don't want to release the cures. No one wants and needs treatments, no we need the cure, thats it!
i also lost a beloved family member to pancreatic cancer and our family was devastated. so i know its not something you fight... my condolences to you
Yesss, preach, same here
@@ursulasmith6402 no need to bring your conspiracy theory into this.
I have several chronic diseases and am an amputee, and I always have mixed feelings about people telling me how strong I am. On the one hand, it’s nice for people to recognize how hard it can be to live day to day. I also appreciate the compliment. However, if someone is having a bad day or can’t do something, that doesn’t mean they’re weak. I also think my ability to stay cheerful is just one of my traits and not a conscious decision.
I was diagnosed with leukemia, but I went "Aaaaaargh!" until my hair turned blonde and then hadoukened the cancer to the shadow realm.
wow, you're such a fighter
Konami is so proud of you for using their code.
The cancer was an enemy stand but having cancer activated your own stand, who successfully fought it.
That unironically worked for some kid that got stung by 400 bees and started sceeaming like a dragon ball Z character. Surviving despite being alergic.
The adrenaline from the screaming basically acted as an epipen iirc
@@b-doi1211 that's wild 😂 good for him!
I remember making a terrible mistake by buying a novel written by "cancer warriors" who survived and "beat the illness" for my mother at the start of her illness. She was dealt a terrible hand and suffered from two different types of cancer. Before she passed, living with family members who would constantly shove toxic positivity down her throat became infuriating. She couldn't stand the "stay positive, you've got to fight" right after a PET scan. As a doctor, she knew what would happen. As a doctor, I did too. Loved ones mean well, but them forcing you to fight against the natural course of the disease was equivalent to denying the disease presence altogether. Which was pointless and rather immature. I was the only one she could be truly miserable with, which allowed her the time and comfort to accept the inevitable.
Once again, great content Dr Rohin!
I'm glad you were there to be able to help.
@ Quite a feeling to revisit this after 4 years. Thank you for the comment!
This reminds me so much about the use of the word “disability” and how widely it’s usage gets debated. From disabled folks/folks with disabilities, the way abeled people use (or in my experience, refuse to use) it, and the way people with invisible disabilities vs people with visible disabilities use the word.
Personally, as someone with invisible disabilities, I have zero problems with people describing me as disabled in the appropriate settings. “Sam needs this accommodation because she’s disabled” is all true and fine. For me disabled isn’t a morally/emotionally negative word, it’s just a state of being. I can’t run a mile, I’m disabled. I wear sunglasses inside stores and headphones even if there’s no music playing because of my disabilities. It’s just a state of being. But I’m aware part of that is because I’m invisibly disabled, and I’ve had to fight to get people to take my disabilities seriously. And I understand why someone with visible disabilities would really like to just jump to the part where they’re a person first because to have your whole identity be “that girl in a wheelchair” would be pretty exhausting I imagine. And I think that specific debate and the nuance of the word is really interesting and I love talking about it, but what never fails to make me want to yeet myself into the nearest body of water is hearing abeled people get all squirmy and weird about the word disability. “Oh she’s just differently abeled” and sentence variations thereupon never fail to make me go from perfectly calm to just. Rage. Because so often it’s being used by someone who looks at the disabled community at large as inspiration porn, particularly those who are forced to brute force their way through a world that isn’t made for them to succeed in instead of just....giving them the accommodations they need.
I have an invisible disability and god things like "differently abled", even when someone's using them in a considerate, nice way, just really annoy me.
I think you touched on something really important here, the difference between people with invisible disabilities or highly visible disabilities. I recommend reading “Scapegoat”, a book about disability through history and why it’s stigmatised today. It’s a really interesting book.
I find it quite interesting when it comes to bureaucratic language. Someone can appear physically 'disabled' and not have enough points for the government to consider them so, yet I, with an invisible disability do have enough points.
@@allycat824 it is absolutely wild to me disabilities get “ranked” given just how individual disabilities, and the impact they have on the person, are. The notion that we effectively have a broad ranking system is just...it’s questionable at best.
@@samanthakerger3273 Depends on the reason for the ranking. Someone who is only blind would still be more functional in a workplace than someone having a seizure every five minutes 🤷
The doctor at the hospital told me to “move on” after my son was stillborn. I thought that was uncool.
That's awful
As a medical scribe, I saw a lot of this language that painted the patient as an antagonist. "The patient denies," "the patient claims," "the patient refuses." I always made it a point to use non-judgmental words such as "the patient does/does not state/report." The chart may never be read and I may be the only one who ever sees it, but if we are to change a culture, we must first change ourselves.
Yes! I hate that!
What would be better than "the patient claims" , out of interest? The patient says? Have you got some better ideas than says? I read my medical notes and it irked me.
@@torashiregato2104 imo "the patient states" works better; "claims" has the implication that those claims could be false, as that is often how the word is used.
Thanks. you're a real one
@@emilyrln thanks ❤️👍
Love this. I’m disabled and I constantly feel like people are saying I’m not “doing enough” when they use language like this or offer unsolicited advice, and when I keep having to shoot down their ideas I know it sounds like I am just arguing but it’s like yeah, I’ve tried that stuff, or it’s not applicable, or the situation is more complicated than they realize/I want to go into.
I have dysautonomia and my BP/HR were wonky and a new friend was like “shouldn’t you go to the hospital?” And I said no, this just happens, I have meds for it but it’s not quite time yet. And he’s like “sometimes meds aren’t the answer - you shouldn’t always reach for meds” and I was like...what do you think they’re going to give me at the hospital? Cardiologist and I have a plan in place to AVOID sitting in the ED for hours.
As a 43 year old woman with a chronic illness, currently having a geriatric pregnancy and who has lost two babies at the 24 week mark I cannot tell you how much I loved this video. Thank you. When my friend sat next to me in church crying because she was basically tired, she had been "fighting" cancer for three years by that time and she was crying because she felt that she had failed in some way and I hugged her and told her that's okay to be tired and it's okay to want to rest. It was our last interaction as she died a couple of months later. It makes me sad she felt like a failure, like she didn't "battle." I am not "battling" either, I am living with, coping with, working with a disease. I feel these phrases put power in my hands and speak more honestly as to what it's actually like having the disease, the other problem with the battle analogy is that others percieve that a person "needs to push themselves" or needs to "think more positively." I am a positive person but when I've needed to lie in bed half the day AGAIN because I just can't find strength to get up, I can feel pretty crap about myself and it's hard to think positively. Thank you for bringing this important subject up.
"They're in charge of their lives - not us"
I love that YOU said this - some of your colleagues *really* *REALLY* need to hear this
For a failing vlogger, he's a real fighter.
no no, you can't use that word it implies that he isn't fighting hard enough; just say "..., he's a real failure"
@@itachi2011100 a real failure of a geriatric fighter vlogger?
I have nothing to add to this discussion, this was just ruthless
@@itachi2011100 he's a real function
"Impaired vlogging function"
This is interesting. I have severe depression and I've been told by family and friends many times that I'm stronger than my depression and that I shouldn't let it beat me etc. etc. which has led me tend to hide it rather than be upfront with it because I don't want to appear weaker and more of a failure than I already feel. I never really thought about how the language of the people around me ( who usually mean well) might change the way I view myself.
This also reminds me of back in the day (1990's) when I was a kid and young adult (early 2000's), I used to use 'gay' the same way I say 'that sucks' as an adult. I didn't realize how hurtful it was until I said it to a coworker who was a lesbian.
She just looked at me and asked me straight out if I thought there was something wrong with being gay. I was taken aback after stammering out that no, I didn't think there was anything wrong with being gay, she said that I shouldn't use it to describe that something was bad. She walked away from me after that and while I apologized, our relationship was rather cool after that.
It's one of the most important lessons I've ever learned, and I'm a little ashamed that I didn't make this connection already myself.
I completely agree with you. As another commenter has mentioned, some of it comes down to personal choice and some people do find the language of being strong/beating a mental health issue or disorder is helpful to them - but we should be mindful of how it can make people feel and nor assume it's helpful to everyone. I've certainly seen people close to me struggle just like you've described, not being open about their mental health issues for fear of being thought weak.
It's kind of an odd sentiment when you think about it. Imagine if you broke your leg and people told you to fight that break. You are stronger than your broken leg, just kick it's ass! Like fighting a broken leg isn't gonna help, is it?
Same! We all used to say it at school (we must be about the same age). I thought it was just a London thing though!
You learned better so you do better. Some life lessons hurt terribly. But it seems you grew from that faux pas. Forgive yourself when you can and stick your fingers in your ears and go "la la la I'm not listening!" when your internalized societal expectations tapes try to guilt and shame you. A friend of mine uses "guilt and shame are not me game" to counteract feeling bad about it.
@@HInc7647 mate are you joking. Pretty much every kid used gay as some kind of insult or pejorative.
At the beginning of nursing school I made the mistake of asking cancer patients,, how are you " but after multiple people answered that they feel shit because of their situation.I changed it to ,, how are you today" and it made a huge difference because it focuses on the current status .
that's great! personally, when I'm asked how are you, I don't know what to say, as someone with depression, because there's a lot to say but I struggle to say it, but when asked how I'm doing on that particular day, that's a much easier question to answer :) Best of luck
@@hotpotato1898 and people usually doesnt expect a honest answer either...
@@bullzebub of course, so it's easier to just lie and chuck a smile their way
@@hotpotato1898 yeah. easier but worse in the long term. you will probably start lying to yourself after a while. and the stigma of mental illness will remain.
When I had really poor mental health, I was labeled as non compliant because I didn't continue taking medication that was actively making me sicker. It wasn't that I didn't want to get better, it's that those medications weren't making me better.
The compliance idea also assumes that doctors always know what is best for a patient and that they should comply with treatment because it's in their best interests. But some doctors are unethical, or don't consider all the possible options, or are culturally insensitive or prejudiced, or downright quacks! It also gets into tricky territory when you cross into the mental health side of things, because a lot of treatment actually depends on what the person's own goals and aims are and how they feel, so the compliance idea works even less well in this setting (not to mention there's a big overlap with mental health problems and socioeconomic deprivation which can make access to care much more difficult).
Same here, some doctors disregarded the side effects of the drugs and continue pushing me to take more, it was like talking to a wall. Every time I decided to stop taking a med after months of getting worse they''d put the blame on me. Not every doctor is like that, but a surprisingly high number of psychiatrist are, at least in my experience. At this point, after trying more than 3 dozens of meds and decades of experience I gave up and avoid them as much as I can. It's a shame, that's not the relationship I want to have with doctors but what else can I do?
@@eliastalks7411 the mental health issue is difficult to navigate. Medications have delayed onset and sometimes can exacerbate problems before they fix them and just cutting them out can induce even more issues. I think from my relatively short experience on the medical professional side that the real key is building a solid relationship with your patients and the patients with their physician to inform them about how and when changes occur or might occur.
@@troydennis96 Absolutely, and taking the time to listen to patients and validate their experiences. Patients have lived experience and know their bodies and mind, and sometimes we can forget that. Maintaining an honest, professional and supportive relationship is key esp when concerning something as complex and changing as mental health.
@@Megaghost_ my GP advised me not to try to seek a diagnosis for my issues. She was right. Let sleeping dogs lie.
I seriously love this video. I recently was talking to my fiance about this. His father passed last year from cancer. He was a fighter, personality wise. He did not give up, he didn't die because he didn't fight hard enough. Some people are unfortunate and find out they have cancer in the late stages and theres literally nothing you can do. Also I absolutely do not like some of the terms they use in OB. failed maternal effort?? Good God...
I cringed when I learned this awful stuff is still being said to patients. But I'm also grateful this man is illuminating horrible shit like that. So we can fix it.
It doesn't surprise me that the field where women are at their most vulnerable is also the one where the language used against them is particularly bad.
In the last moments of my mother's life, hooked up to equipment after a long battle against cancer, surrounded by family, she reached out with a finger and began tracing letters on her leg. L... O...
Everyone starts guessing 'love? love? We love you too"
S... T...
She died minutes later.
@@meretriciousinsolent it has nothing to do with them being women, it had to do with the necessity for precision and detachment in medical writings, especially within charts. If you are a consulting physician or have just taken over the role as their physician you don't get twenty minutes to read a chart, it's about getting the most information in the shortest amount of time as precisely as possible.
Why is it seen more in OBS? Because men don't tend to be in hospital except for disease, wounds or organ failure. They write just as bluntly about men as they do women.
That precise, blunt language is found in other scientific fields as in science you have to be precise (to remove ambiguity) and blunt/detached (so as not impose bias)
That kind of writing was never about insulting, degrading, or removing a woman's worth.
Next time keep your ignorance in your pocket. Lest someone mistake it for stupidity.
@@saulwalker7058 : Accurate recording is essential, and surely not criticised by anyone. But other language conventions could be adopted across the profession to stand for the same syndromes with no loss of intent but significant increase in respect.
Fifteen months ago I was diagnosed with a rare illness, MSA, and in the last few months it has progressed fairly rapidly and I'm having difficulty walking. Today I read of someone on an MSA social media support page who, although she is six years post diagnosis, was still very active because she is a 'fighter'. I was stung because it seemed to be implying that I'm not fighting this disease even though every day is a battle. That is that I've wussed out and given in. I chose not to leave a comment on her post as I know each of us is coping with horrible degeneration in our own way, but words matter and I wish people would think about the unintended negative impact of their well-intended words. Thank you for your insightful words.
Very true. My wife, at 34 was told she would be an "older mother" and immediately started worrying about a pregnancy she was over the moon about just minutes before. And, with our second, at 38, she was worried about being an even "older mother" from the very beginning. Well done doctors. (Both pregnancies went without anything unusual happening, both births were fine, both babies were healthy and beautiful, and we now have two wonderful, kind-hearted, bright children.)
As for cancer - I had it, I 'beat' it. Of course, I didn't, I was as shit scared and depressed as anyone else, but I was very lucky, it was localised, caught early, hadn't spread and I am still cancer-free years later (although slightly less able than I was). I didn't fight it, I didn't have courage, I was a complete mess - I was just very lucky to have a removable cancer and lucky to live in a country with an excellent, free health service.
I also had an exellent orthopedic surgeon, who was a really nice guy. But he was second generation Polish, and after Brexit he got so tired of the 'go back home' commments every time that people heard his name, that he went to work in Australia.
Thought of this today when a nurse got upset at me for being "non-compliant" because I was wiggling. Under anesthesia. I tried to lodge a complaint, and was told that she was "just using a medical term." I said, "I know. I'm a medical professional too. Doesn't mean that's an appropriate thing to say to someone at 45 minutes post-anesthesia. Or to blame them for it."
Sounds like the anesthesia was being non-compliant 😂
As a heart patient I really appreciate the heart function note! I feel my heart is doing its damn best despite having a hilariously screwed up anatomy
I’m proud of it
in my language heart failure is called something along the lines of "a heart that works not efficient" but more in a way that there is too much factors for the heart to do it's job in the most productive way. I think it is quite the right term - it means we can focus on bettering some factors but in general it's nobody's fault
@@raspberrycat4186 yes same in my language(Dutch), although there are two terms, one being 'hartfalen' which is just heart failure and then 'hartafwijking, which means as you described
Awww what a great heart, doing it's best 🥰
Jessica Kellgren-Fozard (a very positive, chronically ill person) made a great video on toxic positivity.
I love that video! I found it at a time when I really needed it. Great recommendation
Her videos are really great!
She is burst of sunshine in an often horrible world. So blunt and honest too. Maybe they could do a video collab together. P
I honestly have never heard the term "toxic positivity" before and I had read many times that a positive mentality actually helps, not hinders, fighting chronical illnesses (wasn't specific about cancer, though). But if there's evidence that it actually hinders progress, I will certainly rethink my language.
@@Nr4747 "toxic positivity" doesn't mean that all positivity is toxic, it refers to a version of positivity that can be. Like how "toxic masculinity" doesn't mean "masculinity is toxic" but rather "this interpretation of masculinity is toxic [because it harms men and people around them]".
A positive attitude can be really good, sure, but if you're suffering and people keep telling you to cheer up/be strong/"at least it isn't X" etc, that can be really, really rough to have to deal with.
I recommend you check out the video mentioned in the comment. It should clear things up a bit.
I've had cancer (I'm well now, thankfully) and I HATED (and hate) the whole "cancer warrior"/"fighting against cancer" thing. I got better because of the treatments I received, not because of anything *I* did. It felt like meaningless platitudes to me.
I remember being confused when I heard the phrase “elderly” when referring to women over 35 when they had their first child.
I saw a fantastic musical called “The Pacifists Guide to the War on Cancer” a few years ago (2018 maybe?) in the theatre at Newcastle Uni, it was the best thing I’ve ever seen on stage and I wish it had had a longer run. It really opened my eyes to the toxic positivity involved in disease treatment, i will bear in mind throughout my own career to avoid words like “fight” and “battle”.
Another thing is the terminology relating to death, and how wishy-washy that can be. I read “With The End In Mind” by kathryn Mannix and I really learned a lot about language and the connotations within medicine (she also happened to have a role with a voiceover in the musical I mentioned above)
I was told I was having a "geriatric pregnancy" at 32. That's a great mindset to head into one of a woman's most life-changing events, yeah. You make a lot of great points Doctor Rohin, but I can't forgive the cap. Not the wearing of it, but what's on it. I would happily send you a proper Bosox cap if you get your address to me! Many thanks for the thoughtful (as always) vl...thoughts.
My youngest cousin had her first child at a similar age, and also learned of the ... unexpected... terminology used to describe the combination of her age and condition. Then more or less laughed at the doctor while explaining that our grandmother was 46 when her mother (my aunt) was born. Don’t let the numbers and such get too much into your head, because there’s only so much you can do about the hard facts. (None of us is getting any younger 😏)
glad I'm not the only one viscerally offended by the Yankees swag ;-)
My mother, at 29, bearing me, was told she was young. A few months later she was 30, and "not young anymore".
Also, once she were in the gyn. chair, and in comes 20 med students, to feel her pregnancy. She wasn't asked or informed. That was 60 years ago.
I know nothing about the subject, but 32 is 'young' to be having a baby, in my opinion. That term is really weird
funny term!
I was trying to fight depression. It wasn't helping at all. I felt really weak and guilty. Much better is to say that it is fine that you are feeling bad. It is OK. It happens sometimes. Not your fault.
100% agree
I treat depression as my body's way of saying something isn't right. Diet, exercise, but also not taking the time to process emotions. Can't control mind or body with just will power, have to work with them.
Would you say "Living with depression" is a better way to put it?
don't have depression myself but I'd like to know if its not too much to ask.
I hate the western concept of depression being a choice and something you can fight. I just happens sometimes and you are better of accepting it, instead of trying to fight it.
@@amneenja5720 I say I struggle with depression or sometimes call it the depression monster. That makers me feel better than saying I am depressed.
When my husband reads an obituary that says "he lost his battle with cancer" or "he fought until the end," he gets upset. He thinks people tend to do what they can, for as long as they can, with the information available to them. Sometimes the courage lies in acceptance of the reality of the situation. Not everyone wants to prolong their death.
It's something I see a lot when it comes to mental health, it can feel as though you're weak or a failure for "letting" it get the better of you
When you have a chronic condition all this fight talk suggests that the other person doesn't listen. You can't fight chronic. It is chronic.
And a lot of the time I find that ‘fight’ talk is accompanied by “Why aren’t you ?” This is usually followed by an anecdote about how they know someone who totally was cured by doing yoga and smoking weed.
@@esthermcafee5293 yes 100%
I have successfully cured my chronic tonsillitis after many years of living with it, idk what you're talking about.
@@riveteye93 By having them removed?
Gosh, yeah... I hate it when people say something like: Hope you're soon better.
After 23 years I do not expect to ever be better.
And when I tell them that it won't get better and hear back "Oh, but of course it will!", that really grinds my gears.
It is always rubbed me the wrong way. “Stand up to cancer” or “fighting cancer “ now the medical professionals in the field may indeed be fighting cancer but not the patient as they are the battlefield. Standing up to cancer implies that cancer may back down if challenged by wearing of a ribbon or donating money. While money is a means to find “weapons “ cancers are completely oblivious to the donations.
My child & I keep getting urgent reminders to "wear pink" on Wednesdays to our Montessori school, and then to buy t-shirts and run around a track for a day coming up in November. Even the best-intentioned educators can become mindless trend-followers, in spite of (clear?) contradictions to their philosophies. I suppose it's a teaching opportunity for me, w/ my child, but the message to her is becoming clear: join the group or be in the wrong. 😔
@@Olehenry 😥
I always thought of stand up to cancer as getting in a stage and cracking some jokes ngl
I plan to give in to cancer
@@Olehenry which is weird considering Montessori ideas are to cultivate independence.
A considerably less extreme example of this and how things are phrased in certain aspects of healthcare is the CONSTANT argument within the ASD Community about Diagnosis first vs Person first language. I'm Autistic. I have Autism. Both Statements are true, but for some people with my diagnosis which way you phrase that is extremely important to them (Personally I don't care, it's semantics to me). For people I know and who do care, I will use their preferred phrasing, but yeah. Anecdotally (I've not gone out of my way to confirm this), I've found people who are very high functioning to prefer Diagnosis first (they consider it a thing to be proud of - it makes me me and it makes me different) but I have seen families of those who are less able to prefer Person first language (This condition that makes their life difficult doesn't make them any less human, their a person not just their condition). There's a surprising amount of nuance to this binary choice.
There is a psychological effect of the mind trying to act out our identity. So I think it can be useful to avoid the language of identity when it comes to negative things.
Personally, I am autistic. It is a pretty fundamental part of who I am, it affects pretty much every thought I have. But I would not fault someone for using person first language, just use whatever flows best in a sentence. However, I do think that diagnosis first better reflects the way language is commonly used. We often use attribute first language, a brick house, an electric car, that tall woman. And when we talk about more personal attributes we also use attribute first language often. I am gay, I am not a guy with homosexuality, I am Dutch, I am not a guy with Dutchness, etc...
@@MrCmon113 I agree with what your saying, and it definitely would apply to some. On the other hand it's also powerful for some to acknowledge something that so that it doesn't have power.
I would say I'm autistic. But then I would say I have problems with sensitivity and social skills. Being autistic is a difference, whilst some of the symptoms associated with can be a disability.
I have mixed feelings about diagnosis first vs people first. My brother is autistic,and prefers diagnosis so I utterly respect that. I hate the common tendency for relatives of autistic people to presume to know best (e.g. "autism moms" who use their childs autism as their own identity).
The same debate is in other neurodivergent communities. I have dyspraxia and I honestly dont know which i prefer, that or dyspraxic. K
On the one hand, it affects everything i do and how I am, so diagnosis first makes sense. On the other hand I find when I say "I'm dyspraxic" I can fall into self limiting thinking. I recently passed my driving test bit for months beforehand comvinced myself I needed to buy an automatic asap because I would always steuggle with gears because I'm dyspraxic. Now after just practice I dont even think about gears, but my own self limiting caused a lot of anxiety. So yeah, I see why people might prefer either diagnosis or person first language.
I have been NED for 5 1/2 years...the war/fight language never worked for me. Cancer was not a blessing nor it showed me how to live better. I am grateful to be where I am but not rosy life because there are long term effects of treatment.
We need support but not platitudes about being strong. It is ok to be weak...our bodies are failing us ...not us
At the same time, you are the physical manifestation of your body, you are your body. Your body includes your brain, which is where "you" are.
Don't forget "Patient complaining of" and "Patient denies". I find that kind of language puts the ol' back up.
@@orangesnowflake3769 yeah it seems super condescending
I prefer to use “patient reports” or “does not report” as a doctor. Just a small change that removes (hopefully) the implication that something is or isn’t true but also makes other healthcare professionals understand that these are the patients words and perspective
@@HN-kr1nf Not only seems, it actually is. When doctors think they always know more about a disease their patient might have had for years and years.. eh, no thanks.
@@demi3115 in my language we use, to translate it loosely 'while asked patient stated that..." or "patient reports/denies". It is useful, because in many cases patient have some theories or some kind of insght but we can't say if its true now, but it is worth noting in records
@@demi3115 In general who knows more about disease, doctors or patients? Discounting objective science in favor of subjective reports is emotionally satisfying but does it help?
Your compassion touches my heart. Would that every other heart doctor had your attitudes and bearing. Fortunately for you, I am 7,000 km away so you don't have to fend off hugs from an elderly stranger.
My personal favorite: "CPAP compliance" when the much more patient-friendly BiPAP is often hidden or withheld from the "failing" patient
I identify as a failure, So it's comforting to have hospitals and medical terms reflect that.
I also heard a psychologist talking about people "completing" suicide rather than committing, because of the negative connotations associated with criminals committing crimes
oh, i have LOTS to say about language in medicine. i've been disabled since birth, with a host of visible and invisible disabilities. i had failure to thrive when i was a baby, though i was too young to really take those words to heart, heh. this is gonna get personal, sorry about that, it got away from me. but i hope people reading can find value in my perspective to understand how the words we use affects ur perception of others and can cause harm.
probably the most damaging thing the average person could say to me is how inspirational i am just for living my life. like excuse you, what do you expect me to do? some folks even go so far as to say such things like "i don't think i could go on like that", they'd "give up" or outright saying they'd kill themselves if they were me. i have a host of mental illnesses as well as physical, and i've dealt with suicidal ideation for years. there's nothing quite like having those dark, unhealthy feelings validated. it also makes me feel like a failure, or that i'm fake because i'm not the ~inspiration~ people expect me to be. i'm living my life just like everyone else, it just looks different from yours.
and the compliance thing you touched on is very important for doctors to understand! i think it's important that doctors take note of all the factors that affect patient's abilities to follow their treatment regimens, and not just penalize them for not doing it. physiotherapy is the most familiar example i have for this. it's difficult to keep up a routine of doing painful exercises everyday! as a kid my mom struggled to do exercises with me because she was a single mother going through nursing school, she didn't have time to stretch my legs every day. that was not her fault, she was doing the best she could, but couldn't keep up with everything that could possibly improve my life because there are only so many hours in a day.
this mindset can harm patients who ARE "compliant" as well. as a teenager i had an intensive orthopedic surgery and i was expected to be up and walking in 8-10 weeks. it took me several months to get there. instead of listening to me or my mother saying we were following the rehab regimen, the surgeon yelled at me for not being compliant. yes, YELLED, and at a child when if she truly thought i wasn't compliant, should have directed that concern at my mom. i lost a lot of mobility from that surgery that i might never gain back.
as soon as i could walk again, i struggled to keep doing more physio exercises because i was a severely depressed teenager who suddenly had chronic pain they didn't have before. and my mom was still a single mother working full-time, and didn't want to fight with an angry 15 year old every day. i don't blame her or myself for these "failures", i blame the system that failed to support us. all under the guise of me being a non-compliant patient instead of a child in need of support.
i know its been forever since you posted this comment but thank you for sharing such a personal experience
@@ChanceChaos thank you for reading it
I feel this "you're a fighter" line can be rather disheartening, whether it's directed to a cancer patient or someone with depression. Don't assume fighting is good, it's often acceptance that helps you survive
I am going to use this, as I struggle and mange my TRD, treatment resistant depression. I have done almost everything and when I learned to stop fighting I regained some quality of life. Acceptance is surviving and is not surrender.
Everyone's a fighter, whether or not you put any thought or effort into it, your body will fight till it dies. If someone said "You're a fighter" to me, I would take it to mean that they believe I will survive, which is reassuring.
Agreed. The better response is, "I imagine it's hard. Would you like someone to listen to you? A shoulder to cry on? Someone to help you with the chores or shopping? Would you like me to fix dinner? Would you just like to visit for a while? What would you like me to do to help?"
Yes. When I stopped fighting my chronic illness and accepted it, I found life much easier.
I have ehlers danlos syndrome. Starting from when I was a teenager, the most common phrase that doctors would say to me was "you're so young". I don't give a damn that most of your patients with a shoulder impingement or a torn meniscus or a herniated disc or my vitreous humor to be degrading are 20 years older than me. I'm obviously not too young because I'm experiencing it now. And every time they say that I'm left to wonder what my life will be like in 20 years if I'm already having these problems.
Also, if I was so young to have all those problems, why didn't anyone question WHY I was having them? Because they never asked that, I wasn't diagnosed until I was 35 and had been referred to a neurologist who finally put all the pieces together.
To my knowledge, EDS is also genetic, so ... you had it when you were one day old. You had it when you were NEGATIVE one day old, too ...
@@jcortese3300 yes it is genetic, but I was the first person in my family to be diagnosed.
Oh, yeah. Diagnosed at 39 with congestive heart failure after years of co-morbid chronic illnesses and "but you're so young." And at 45, I'm still hearing that I'm too young to have heart failure, from medical people who should know better.
Diagnosed at 16 with bursitis in my hip. I feel ya.
Why am I not at all surprised to see another EDS patient here?
I've always appreciated when people call me strong and a fighter in regards of how I deal with my chronic illness. And recently when I got another long term illness on top of it, my friends telling me that I have grit, that I can fight this, it made it easier, because to me it means they saw me as strong, and then it has to be true, so I could take strength from their view of me, and keep fighting. To me, that's part of my identity, and people not seeing how hard I fight to stay healthy and in control are people that don't see me.
I find this "don't do x, because one person once took offense" to be deeply toxic, and often said by people without any real experience in the issue. For those of us who HAVE to fight our chronic illness, every day, for the rest of our lives, feel free to see us for the fighters we are.
Honestly this is such an important video. Language and how you use it is vitally important in all walks of life, but especially so in a cancer diagnosis.
Geriatric pregnancy is a term that had me ROFL the first time I heard it...
Recently diagnosed with ALS. I'm going to die FULL STOP
Sorry to hear that. Hope you are coping well, and that your time left is as good as the circumstances allow them to be.
I’m sorry to hear that. My mother had a slightly different form of motor neurone disease (progressive bulbar palsy). In a way, the fact no cure was available for that meant we could concentrate on quality time as opposed to cycles of chemo and so forth, and indeed she didn’t have to deal with people telling her to “fight it”. She described it as liberating. All motor neurone disease diagnoses are total fuckers, but I hope you can find some peace.
I’m sorry to hear that. I hope your condition is managed with comfort and compassion and you have the resources to do what you want to do for as long as possible. My grandfather had ALS and that’s how he viewed it at least.
Thanks for the concern, I'm doing as well as can be expected. I guess my point was I'm spared the platitudes as most people don't know what to say when the prognosis for "recovery" is zero.
Sorry to hear that. I think Rohin said it well when he said it is a total fucker. Concentrate on enjoying the time you have (which applies to all of us, since we could all be hit by a bus or something tomorrow), but don't feel you can't enjoy doing nothing much, or you can't enjoy yourself more a bit later on by having a good cry or something over it.
I recently learned from Psychology in Seattle that in the psychological and psychiatric fields the term "committed suicide" is now considered outdated and insensitive because of the connotations of the word "commit" (i.e. committing a crime). Now it is correct to use the term "completed suicide" because it doesn't stigmatize the person for their struggle.
There is a definition the I have read. Suicide is not chosen; it happens when pain exceeds the resources to coping with pain.
Other options are simply 'died by suicide' (my personal preference as it's very neutral - I work in communications in the mental health field), interestingly one very large international prevention org opts for 'suicided' as a verb but I can never quite get comfortable with that as it just seems a bit...clunky?
Similar in the Netherlands, ''zelfmoord'' (literally: Selfmurder) isn't really used anymore because of the murder part. Instead ''zelfdoding'' (self killing) is used more (and suicide, obviously).
Completed suicide sounds weird, to me at least. Nicola mentioned died by suicide, which personally sounds a lot less clunky to me. Just my 2 cents.
i thought suicide was illegal, illegal action towards oneself. hense assisting it is illegal
YES!! All of this, yes! As someone with disability I often find myself yelling into the void when it comes to language and word choice. I’m so careful and honest when it comes to it. Most people always talk about it without living it. Thanks for this!
“They’re a fighter, I know they can get better” has preceded futile efforts that only prolonged the pain and suffering of a patient more times than I can count. That may be a more uniquely American comment than applies for many other countries, I don’t know. It is a very difficult line for the practitioner to walk. When is it over? Should it be over? When have we gone too far? I hope that practitioners continue to struggle with these questions, for if we somehow arrive at a “one size fits all” answer, we will undoubtedly be doing a great disservice to some of our patients. Language is very important when discussing these decisions with patients and their families.
It sometimes happens here too in Australia. Doctors are trained to save lives and can get stuck on trying for too long. The wise ones know when to ease up and just be there for the patient.
Medicine might have a "lingering authoritarian" problem - where the doctors were talking down to patients. I still remember the doctor that inspected me when I had an infection in my adrenal glands - she did not do that but communicated respectfully and very clearly and explained what the problem was, the symptoms and the predicted recovery. The sad point is that I remember that as something to remember...
Hospitals still definitely have the power struck ones who believe they are all but deities to be worshipped and obeyed. I have seen a lady with cancer abused by a surgeon in the emergency room, who stormed in and spat at her, "yes, you are coughing blood because have cancer because you smoked." That was how she was diagnosed. I couldn't believe it. She was in utter shock. There is no way, or circumstance in which that is acceptable.
I've heard many accounts of women having abdominal pain and getting a scan or xray and when the dr can't find anything they just think she's overreacting. But once her symptoms have worsened and another scan is done the condition has progressed so badly she needs to surgery. Idk if that says more about medical knowledge of female bodies or on the dr attitudes tbh
@@kushegga95 Ain’t that just incompetence
Well in 19 century it was her he hap in education between doctors and patients, most of the patients were illiterate, so they had to obey the doctor
5:22 "It was chemo that failed the patient" I like that much better.
I believe " presenters "set the tone for the comments they receive.
Yours are usually thoughtful,funny and sincere ,and I love reading them. Thanks.
"Incompetent cervix" is likely to be especially hurtful if the cervix is "incompetent" because of previous medical treatment, such as having a cone of tissue removed for (I think) a biopsy. I knew someone who experienced that.
I've been bothered by the word "compliance" myself. It means "obedience", and (among other reasons for disliking the expectation that I will be obedient), I believe that my medical care goes best if there is a collaboration between myself and the doctor(s). The best example I know of that collaboration is a gynecologist who gave me a list of six treatments for a condition, ranging from "do nothing and wait for menopause" to "have a hysterectomy", gave me the pros and cons of each, and said he would support any of them I chose. Then when I later heard of a seventh possible treatment, he told me why it might work (which it did for quite awhile) and had no objection to my trying it.
Another term that I particularly hate, as someone with insomnia and two circadian rhythm disorders, is "sleep hygiene". It implies strongly that insomnia is not only the patient's fault, but that in some way the patient is disgusting and dirty.
(BTW, the psychiatrist who did 8-9 weeks of CBT-I with me told me he had thought having two circadian rhythm disorders was impossible before he met me. You live and learn, Dr. X. :-) )
The best time I heard the term "He's a Fighter" used in a medical context it was when one of my high school class mates refused to be catheterized.
Broke his jaw and his leg in an ATV crash, but he apparently snapped right out of his sedation over the tube about to go in his urethra. Now that's a fighter.
A great critical insight. I would never realise how saying such simple thing can still be taken with a great polarisation.
Check out this: if you don't quit smoking you will die early.
OR if you quit smoking it is easier to run for a longer period.
My mum refused to say she was 'fighting' cancer. She insisted that she was working *with* her body and didn't enjoy the fighting analogies.
She also had a 'geriatric pregnancy' and was absolutely not on board with that term!
I think I also try to avoid battle terms for talking about illness, but I can't say I've ever considered it that seriously so this was food for thought.
This hit pretty close to home. I just recently lost my grandmother to cancer, by the time she was diagnosed it was already way past terminal and she only made it 2 months from diagnosis to death.
There was no "fight" to be had, it was just trying to keep her pain and nausea free day-to-day. I found it difficult to find the right words for the situation. Even a more neutral term like "struggle" didn't really seem appropriate. I wished at the time that I had a better vocabulary to describe her situation with her illness
Positivity can definitely be toxic, too. I knew a terminally ill patient who was told be a friend, she „felt“ she had still years to live. When she died only weeks later, she hadn‘t even prepared a bank mandate for her son and he struggled hard to pay for her funeral. Thanks for the well-meant cheer up.
My friend’s son was paralyzed in a horrific car accident. He has made huge improvements over the last year, and perhaps he may indeed walk again someday- but his Mom INSISTS that we only talk to him as if his paralysis is only temporary. She is convinced that he will walk again as long as he’s surrounded by positive thinking. She excommunicates family members who refuse to comply with her delusions.
I'm not "fighting" depression and chronic back pain and anxiety (etc) - I'm suffering from it. There's no fight here, there's only damage control and medication and mitigating my symptoms.
"geriatric pregnancy" sounds like something that should be in a checkout lane magazine right next to aliens and 3 eyed babies :D
😂😂😧
my Ob/gyn regularly called me that at 37. It made steam blow out my ears....
@@LadyCerberusRC apparently 35 is the new "geriatric" lol. No idea how they came up with this jargon, but it looks like most are changing to "advanced maternal age" instead. There is some evidence for higher risk, but also evidence risks can be mitigated for healthy women who get prenatal care www.ncbi.nlm.nih.gov/pmc/articles/PMC4554509/
Well, how about the true (and rather uplifting) story about this 61 year old Nebraska woman who gave birth to her own grandson? www.theguardian.com/us-news/2019/apr/06/us-woman-61-says-being-surrogate-was-gift-for-her-son-and-his-husband
I was a geriatric mother at 30 😳 it was my first baby so I had no idea what I was doing and yet because if my “advanced age” it was expected that I knew everything
I'm glad you introduce all actors by their most famous role because I don't know actors names for shit
For the record, I think I'm the Little Lebowski. That's why I'm keeping a low profile.
I had a brain hemorrhage, but made full recovery. In hospital some of the staff would say that I had "will-power". The thing is, because of the location of my injury, I always thought I could do anything. The patients who had different injuries and could not mobilize the energy for rehabilitation didn't "lack will-power", they needed a different kind of support. Most of the staff understood this, but I feel that it is important to remember, when you meet someone who doesn't make the changes you would like to see.
I work in the communications team at a large healthcare trust, so this kind of consideration of language and word choice is something on my mind most days (often having to describe these things to clinicians wrangling over us changing words in website copy etc. - treatment 'compliance' is a regular offender), I love that you've dedicated a video to it! 🙌🙌
Thank you. It is wonderful to finally see a physician who understands that a physician's words and subsequent thoughts the patient may have about those words (diagnoses and prognoses) impacts the body and the patient's ability to recover. Words have power because of the emotions elicited by those words. Emotions impact our immune system and a myriad of other biological systems in the body that can impact cell functioning, and ultimately the ability to heal. Bravo.
Personally I have Crohn's disease but I would never say that I was fighting Crohn's, I have accepted it and am treating it but no matter what I do some days are gonna be fucking terrible
Crohn's isn't necessarily a death sentence, so you are "dealing" with or "suffering" with crohn's. When you are not, you are not. Likewise, many cancers are not likely to kill, and we typically don't say people that are living with cancer is "fighting" cancer. Fighting is an apt analogy for cancer, because the treatment is going to cause suffering, just like going into a fight is going to cause suffering. There is also a prize if you win, and at minimum you had to deal with the suffering if you lose.
Let's hope that the treatments you engage in make it bearable at worst.
@@Uhlbelk Honestly, it's the opposite of a good analogy, because if someone dies of cancer you're indirectly saying they didn't fight hard enough.
@@demi3115 But it still works. A losing fighter in a martial arts match didn't necessarily fight any less hard than the winner. Effort is just one part of a whole, like how the mindset can have an impact for cancer (like placebo).
That said, I do agree with you that it can be an unhelpful analogy to the point where I think most people would be better off without it. You shouldn't fight terminal cancer. You should find a way to deal with it and find closing.
Yeah I'm living with ME/CFS and that is the best way to conceptualise it. Acceptance and doing what you have to do and what you can do. But man it's good to bring out the battling terminology when you're having a good winge. Hahaha
I so agree. My own mother could not accept her diagnosis. Partly because she was angry about the doctors not taking action on her cancer early enough and partly because she thought if she just fought hard enough she could beat it. Her refusal to accept her situation lead to great suffering in the end as she kept rejecting the idea of hospice.
When my father died I got quite irate at the general discourse we have over death.
As an athiest, and as was my father, I dont think anything happened. He died, he lives on through my families memories of him.
But I'd be quite annoyed at "passed on" or "moved on". How he's looking down at me or watching over me. The general language is very vaguely Christian.
Now I didn't voice this to many people. They mean well, even if it probably frustrated me more than it helped.
I understand that, at least where I live, Christianity is the majority and thus even common discourse uses language derived from it. Doubt many even consider they do it.
Whole experience really made me focus on how I discuss with others. I don't make assumptions on their faith and thus shape how I talk in a very generally secular way.
Eh doubt anyone will be convinced by me on this.
So what would be things you'd like to hear for comfort? In general I have no idea what to say to people who had family or friends die. But if I really had to I'd fall back on Christian sayings because I am a Christian; I can see that just being more hurtful though to someone without the same beliefs.
Personally, I don't believe people go nowhere - it just doesn't seem credible to me. This isn't really a Christian view - if I had to guess, a super intelligence simulating the universe to answer a physics problem seems more likely than the traditional Christian view to me. The "passed on" or "moved on" language works for a lot of different views - any that believe that people, in some sense, exist after death. Even if you believe that death is the end for a person, and they exist only as memories in others, that is still a sense of existing, and "passing/moving on" to that stage seems like it could fit. Perhaps this is a stretch though? I think people tend to view it as a sort of catch-all for people's beliefs, but I guess it doesn't fit well with the belief that there is nothing after death. Abbreviating it to just "passed" seems common, perhaps as a way to sort of avoid saying on to something? I guess people just don't like to say that someone has died, and feel there needs to be some euphemism for it?
"He's gone"
I am convinced. I am totally with you on this as an atheist myself too. When my mum died I dealt with the same thing from my Indian (Hindu) family, most of whom really aren’t that religious either but death brings it out of people. I let it all wash over me, they mean well and some were very close to her so that’s THEIR way of coping I guess. And you know, it IS kind of soothing to imagine she can see her grandchildren and so on, I totally sympathise with why people talk like that. I am happy to let them.
FWIW, I usually say something along the lines of “I won’t insult your intelligence with empty platitudes, but do know that I’m here for you.” Sometimes just reinforcing that they’re not alone is enough.
Take this with a grain of salt, I'm not highly educated, but it really makes me remember when I was in dialectical behavioural therapy and we discussed the purpose of different emotions. My rudimentary understanding is that anger/aggression is useful for defending yourself - raising adrenaline, lowering inhibitions, even increasing pain resistance. But it's very much useful in a short-term way, for getting through a brief confrontation, you know? Of course that therapy was very much focused on our emotional and mental health, but not only am I trying to apply it in a holistic way now - even at the time, having already had my diagnosis of Fibromyalgia for quite some time, I understood that emotional regulation was part of reducing pain and fatigue.
The other thing I was thinking is that people who haven't received a terminal or chronic diagnosis, or had a loved one who has, may not understand that the diagnosis causes grief. Can't speak to anyone else, but for me, it meant accepting that I just don't have all the potential I grew up thinking I do - my Fibromyalgia and severe mental illnesses have already kept me from attending university or holding down a job, and even if I do recover later in any way, I won't get these years of my life I've spent nursing myself back. So it has left me grieving. Obviously it's a different grief to a terminal diagnosis, or to the death of someone else, but it is still a kind of grief, and follows the similar patterns.
DBT taught me that part of the reason for suffering is that we wish things were different, and we try to resist, avoid, or deny things that are real. I think that's what grief is, more or less. To move forward, you need to accept the way things are, even though it's painful, intolerable, unfair, and your body is trying so hard to help you physically escape or fight this thing that you can't run from or beat with a punch. And that's what the Fibro Strong and Fibro Warrior thing reads as to me - other people have different experiences and they're welcome to them, and other interpretations of what strength and being a warrior means in the context of having a chronic illness. To me it feels like saying "No, I can change this, I can fight it, I can resist it, I can defeat it", and to me that feels like something that helps if I need to push through a single short task, but in the context of a chronic illness that could persist for my entire life? It's exhausting trying to keep up that aggressive energy, that momentum; it's bad for my emotional and mental health, as someone with anger issues.
I mean, I'm not over the process. I'm not over being frustrated and wanting to scream and rage because my disability makes things so hard and so painful whether I'm "fighting" it or refusing to see it as a "fight". It's an emotion that most people would have and I think it will probably always require some venting to my friends to handle my outrage. If you want to capture and channel that emotion, I honestly have no idea if that works for other people, it doesn't for me but we're all built different! But definitely for me, I want to deliberately move through my anger, let it pass, let it go, and choose methods of self-love and self-care to cope and to do as much recovery as is possible.
Will it work? I don't know. It's based on DBT, and you can look up studies about DBT for useful studies and data on its hypothesised effectiveness, although it's still a fairly new therapy. I don't intend to be used as a single case study that somehow proves this is the best way for every person to approach a chronic diagnosis, that'd be silly. This is just my own feelings and experiences. I thought maybe someone out there would find them useful, or would like to talk about how Fibro Strong and that kind of thing is actually not (necessarily) what I have characterised it as here.
Definitely for me, though, describing my Fibromyalgia as a "fight" that I can "overcome" if I'm "strong" doesn't feel great, just because I'm already so tired lol! My illness is all about pain and exhaustion! I would really rather be told that it will feel better if I rest up and take care! Ideally that would also be true lol, but obviously I'm not living the ideal :P My mental illnesses are just a complicating factor, because it is a balancing act for me not to burn out and sink into depression, or become obsessed with the idea that if I can do something perfectly then nothing will go wrong, or lean into throwing my entire strength at something and become manic. I don't want to centre images and language of conflict and survival in my life or recovery, for me it's about focusing on love, joy, compassion for myself and others, and the kind of peace you require to let go of your dreams when clinging to them is hurting you.
Sorry for the huge wall of words, thanks if you read this far and gave my perspective a chance! I don't usually comment because I have anxiety, and I talk waaay too much once I get started lol. Take care of yourselves and like Rohan said, give your friends with disabilities and illnesses the space to define how they want to be taken care of. If you have ideas, offer them, but be willing to ask "What do you want? What helps you?" as well. And stay safe out there!
Timing on this was pretty relevant- just had to put my dog down for what we presume was a brain tumor, and hearing the vet describe her as a fighter hurt. I didn't want her to have to fight, you know?
My sincere condolences - losing a pet is always hard. My cat is just out of radiation therapy for a lymphoma (fingers crossed it'll help), but thankfully the vets were careful with their language. The last thing I would want my cat is to have to "fight," she's already had a lot of strife in her past and I just want her to have the best, most comfortable options available.
What I hate as to pet deaths is the term "The rainbow bridge." I never say that and just say I'm sorry your companion died.
@@dacisky Oh yeah, I hated that too, even back when I was eight and my first pet had just died. Always felt super patronizing.
@@dean7301 It sure does. On the rabbit group I'm on,when your rabbit dies he/she gets a little rainbow on his/her page. I hate seeing that and asked Admin just for an icon of a simple stone or a tree in place of the dorky rainbow for those who want it.but he never did it.
what would you rather hear instead?
Toward the end of my mother's life when she had the choice of palliative cancer care that could have lasted months with a reasonable quality of life, she was given a second opinion from a doctor who told her aggressive treatment could give her many more months but it would be risky, would take those quality months away and had maybe a 15% chance of her benefiting. Thinking of her grandchildren and the obligation she felt to 'fight' for as much time as possible with them, she chose the risk, and within a few weeks died of infection she may otherwise have survived.
I've always wondered if she understood that 15% was pretty much meant staking her life on the roll of a dice, or why we let her do it. So apart from the toxic positivity, the misunderstanding of risk can be a factor in all this too.
one thing that really annoys me is if someone is struggling with severe depression for example, people act and say things as if there is a 100% chance to recover.. there isn't.. it infers that it's less serious because it's "just in your head" .. ..
Technically, Alzheimer's is also just inside your head, but nobody ever makes that generalisation...
We'd see a lot more recovery from depression if psychiatry didn't think the answer to "this SSRI is useless" is "take more SSRIs." I don't know if 100% is achievable, but I do know you won't get there even if it is by throwing overhyped mild antiinflammatories at the problem. It turns out that when you take a real mind altering drug instead of the statins of the brain, you can feel it working in hours instead of having to wait weeks (guess how I know).
I've been thinking about this a great deal since my cancer diagnosis and the psychological support available to patients and their family. I remember the guilt and shame I felt when I wasn't able to eat or take my medication, and how I wasn't 'fighting' hard enough or 'giving up'. I never actually felt like I was fighting anything during any of my treatment; it was something that was happening to me, something I was doing against my will because I had no other choice. So much happend to me, my hair fell out, I lost weight, my mother fed me and bathed me, nurses took my blood, technicians scanned my body, doctors prescribed chemo and radiotherapy, I did nothing. All I did was wait for the uncomfortable bits to pass and enjoyed the relief that the more comfortable days brought. What I find the most fascinating is that I've only made these realisations in my recovery, there was no energy or clarity to realise any of it at the time.
I'm pretty big into death positivity, changing language around imminent death and am studying to be a death doula- and you're right, toxic positivity can impinge one's acceptance of a poor prognosis.
As a cancer survivor with a twin brother who died of cancer and a mum who died of cancer, i do not want to hear that i fought cancer. My mum and brother did not fail in their fight against cancer. As someone else said you are the battle ground.
As an Andrologist, I changed the name of a male infertility screen to a fertility screen. Same test, less negativity. The result? More men handed their forms in with their samples.
My mom has had breast cancer twice, and she hates being called a cancer 'survivor' or 'fighter'. They talked about it one session of her cancer support group and some people said they loved the fighting words and others loathed them, like they were being judged for making choices about which treatments are worth the risk-benefit ratio
In my experience, phrasing disease as something to fight is incredibly counterproductive when the patient is never going to get better. People want you back to normal more than they want you happy with the new normal you're living.
In French instead of heart failure it's "insuffisance cardiaque" or cardiac insufficiency, which strikes me as more accurate. The first time I heard someone close to me diagnosed with heart failure I thought that meant she was dying!
I have lost many close family members to cancer and I dont think we used the term fighting cancer, even though each one of them gave it their all. We did always say after chemotherapy that chemo better be fighting the cancer cells. One of my sister's that died of cancer refused to call hers cancer and named it Norman I still don't know why haha
This is surprisingly common! I listened to a podcast about someone who called theirs 'Buttercup'.
Not cancer, but I call my anxiety/depression Brenda :D
It sounds like a creative way to cope with a hard situation. Thank you for sharing her memory.
i‘ve never encountered this, but i absolutely love the naming thing!
My father was completely shocked after hearing his cancer diagnosis that the whole cancer word became taboo.
So me and my mom named it Vegetable since saying it made us both smile a bit even though we were discussing serious topic.
I’m so tired every day between chronic pain and mental illness, and it’s just nice to know that other people agree that “fighting” and “winning” are so grating. I’m not fighting my illnesses-I’m working with and around them to become who I want to be. And some days, it terrifies me to now that doctors are judging me about how I do that, and moreover using the same damaging language.
Idk good video ty
I've had a chronic disease (ulcerative colitis) since I was 8, so for 13 years. It only got worse and worse until I had to have 4 surgeries. The terminology that always bothered me was that I was so "strong" for getting through it. It bothered me partly because I heard it so much, from every single acquaintance I've ever know, but also partly because I wasn't my choice. If I had been weak, what would I have done? Given up? Because God knows that's what I wanted to do, all the time, but there literally weren't any way to do that. So I got through not because I was strong, but because there was no other way. Telling me I was strong suggests I had a choice.
I'm disabled and I love this video. Thanks
I really admire your ability to jump from different subjects, different locations and different outfits. You're a master Rohin.
As someone with chronic, often debilitating depression and ADHD, I remember feeling absolutely insulted whenever people with disabilities were called courageous and strong for having a positive attitude, in a way that made it seem like somehow their disability was cancelled out just Bc they are a happy person. It made me feel like, I must be absolutely hopeless, Bc I lack that positive fighting spirit. They are strong and I am weak. And I deserve to suffer. I know that for most people, it’s hard to consider the idea that praising someone’s positive attitude can be anything but good. And often, it is good. But it can stigmatize the very experience of suffering. That if you aren’t able to smile through your suffering, you are somehow lesser. The best thing I ever heard in response was, “it’s ok to not be ok.” Bc it is. And I wish I was told that before.
Another thing that bothers me is that society only likes people that "stay positive" during a horrible life ending disease/affection. It only puts pressure to those people to act like society expects of them.
Yup, those who struggle in the world must adapt or perish. How even DARE you expect the masses to accommodate to you?!
And the people who somehow manage to pull through are used as inspiration porn.
I gave some thought to the way people relate to cancer over the years and, when I was diagnosed with CIN3, I remember my first reaction was telling the doctor 'It's okay, I don't take cancer personally'. That sums it up.
Too often cancer is personalised as the result of some sort of outside force once can battle against while the reality is more of an inner random occurance in an ocean of different drivers that constantly create opportunities for such an event to take place
I believe such phrasing can help for some people, but hurt others. A more personalised approach is what I really think is needed, but I guess it's the numbers game sadly. I do hate how the politicians of the world resorted to treating COVID19 as an "invisible enemy", using rhetoric that scares most and induces panic, thus killing rational thought. It's similar to what the so-called leaders say during wartime to get the masses to kill each other out of terror of being killed.
Check out Ed's piece - it's about the language used around COVID too.
@@MedlifeCrisis Thank you! I most certainly will, really was on the lookout for some good science writers.
Agreed but overall cancer treatment and funding is couched in combative language. In a general i feel ig should be eliminated and a healthier more compassionate language should be used. After that thd language that people use privately with thier doctors, family and friends is up to them, but the medical establishment and advertising needs to change.
But Covid IS an invisible enemy! As is any other disease.
I think that a chain of command is what you're thinking of. you gather community leaders and explain the full picture to them, then have them find the best language to use in their environment with goals and assistance according to the needs of each. For example a rural village will trust and listen to their priest or mayor over a 100 doctors, while words of faith will mostly push away a city's crowd. same goes for other religions, ethnicities or other groups of common grounds.
As someone who is chronically ill, I always have felt like I am a “fighter”. My disease may always win the war but I get to fight the little battles with how my day goes despite the illness overall. If I didn’t fight it at all I would stay in bed and never do anything because that’s all my body would like to do but instead I can mentally fight through that and push through those feelings and actually get on with living my life such as going to work or doing things outside the home. Now I know a lot of people feel differently but that’s how I see it for myself
This topic reminds me of something else kind of related: how medical staff talk during procedures where the patient is under anesthesia. As I understand it there have been a few movements in the medical field that even regular non medical people (me) have heard of to make standards for how to talk during these medical procedures (conduct yourself professionally with the team and the patient and talk as if the patient can hear you because they can). Just because we generally don’t “remember” the procedure doesn’t mean we’re not hearing conversation on some level. I for one even came out of anesthesia twice during a procedure and told the staff and the anesthesiologist put me under again. Also, there’s a small - estimated a few hundred thousand a year? - group of people who seem unconscious and can’t open their eyes or talk or move but are aware the whole time and can feel everything during a procedure (when I first read about that by a woman who is like that and works to raise awareness of this in the medical profession, I was like, omg! 😳).
Thank you for this. As someone with complex medical issues (including a heart with function issues) its nice to hear this from a professional. I really enjoy all I learn from you.
I have thyroid cancer, and sometimes it irks me if some people in my life say something like, "you're so brave", "you're so strong", etc. I feel that the connotation of "being brave/strong" in the context of illness is that I was able to pick my own battle and armour and I just woke up one day thinking, "mmm yes, the weather is nice, it is a great day outside, so I'm gonna choose to be brave today!" When in fact my diagnosis is something that is beyond my control and I have no choice but to be "strong" (or else I'll succumb into depression and neglecting my own needs altogether :D)
But yeah like you say, people can react differently to similar diagnosis. Some people like to see themselves as a fighter, but not me. To me, it puts too much burden on my part and it's just not a very healthy mindset to have especially when I face some bad days and don't feel that I'm not "strong" enough to "fight" this "battle". Okay, thank you for coming to my TED talk.
i worked in pharmacy for 2 years and compliance was the worst part of the job. having to call patients who's insurance won't pay for their meds and ask why they aren't "complying" every single week was the greediest thing a company has ever asked me to do and why I left
Someone should study if thinking about being strong and standing or "being a man" as they say in some cultures has an actual effect on recovery, like a placebo effect or something even stronger..
Interestingly, in the studies I read, men were significantly more likely to adopt military/violent metaphors and were less likely to engage in "productive" behaviour - ie delaying engaging with palliative care, embarking on futile and aggressive treatments etc.
@@MedlifeCrisis/ *We are all dying of something, known or unknown. * Some studies have reverse findings. Right wing ideology is less likely to suicide, then left wing. From a recent study from Norway on the dangers of Right wing ideology.
I can tell you that my father and my family felt like we were failures for not beating my dad's cancer. My dad did too. And palliative care was seen as giving up the fight. My father only received 3 days of hospice before he died and his death was quite miserable! He refused to make plans for his death even though his cancer was not beatable. I think that using this language is almost a sort of victim blaming. I have guilt to this day that i couldn't beat my dad's cancer. That I couldn't save him. I think being more honest about cancer and eliminating this toxicly positive, combative language would help people live better until they die thus improving quality of life and relationships.
@@mellie4174 Has less to do with language and more to do with clear unambiguous realistic expectations. Cancer is the worst disease because we never say you are cured of cancer, only that you are in remission. I'm sorry for what you went through, but I have serious doubt that the language of fighting was the cause of any of it.
I read about a study where people prayed together with patients, which didnt have a positive effect on outcome compared to non praying.
This is so real. I have SMI (severe mental illness) and have been in treatment for more than half my life so far. The idea that I am simply not strong enough and need to try harder has been slowly grating away at my fortitude for years. I have believed that for a long time.
I am not often called strong or a mental illness warrior, but when I am, I can't help but want to point out that fighting-including actual physical combat-isn't optional.
Like, sure, perhaps we are strong somehow for putting up with an illness. But you'd do the same thing. And the next person, and the next.
There was this campaign in UK with posters that read "cancer, we are coming to get you!" not sure that's the best wording TBH.
Here in the States, the hospitals rent huge billboards in prime locations along major highways with similarly poorly worded advertisements. Whenever I see one I wonder if that's part of the reason our healthcare is so expensive. It also seems pointless to me. It's not like I'm going to tell the ambulance driver, "take me to St Elsewhere. They were given a five star rating and voted best in the region"
@@ambulocetusnatans Hospital ads? Sounds insane and very American
@@limiv5272 At one time, a wide variety of businesses would get billboards, but lately, there are only hospitals, multinational corporations, attorneys, and churches. I guess those are the only people making enough money to afford billboards these days. I know my small business can't afford one.
@Tommy Salami I also forgot to mention the billboards for the Lottery and other forms of legalized gambling. Another profitable industry in this economy.
And of course how could I forget to mention the politicians during an election year. I'm sure the billboard companies are making quite a tidy sum this year.
@Tommy Salami Yea, right. I'm just glad I don't live in a municipality where the ambulances are privatized.
I am medical historian currently undertaking my Masters in History. The language element has always interested me. The Eugenics movement had some of the most cutting language, especially when you consider that the conditions that people were institutionalised for are very much treatable now. "Disturbed" was very common in psychiatry and could mean anything from a strongly willed woman to someone with schizophrenia.