I have a good life. I share it with a loving, supportive partner and three great dogs. I live in a beautiful part of the world, and I get to enjoy this beauty every day. My work is creative, meaningful and rewarding. I feel grateful for the way I’m able to live, and for the many fortunate circumstances that make my life a happy one. I’m also someone who, as a fairly young woman, had a stroke and who now lives in a disabled body, managing the numerous physical and neurological sequelae of serious brain injury. Upon meeting me, individual reactions to this last fact can be very strange, quite surprising, and occasionally somewhat hurtful. I’m writing this post today because I have become very tired of encountering a particular remark that’s routinely said to me in response to my stroke: a remark I find truly bizarre, and which is yet probably the most common stroke-related thing I hear from other people – “you’d never know”
“You’d never know you’d had a stroke” is something that countless people say to me upon meeting me for the first time, in many different situations, from casual dog-walking encounters to business policy meetings. Surprisingly, it’s very commonly said to me in healthcare settings, and perhaps equally surprisingly, women say it much more to me than men. Perhaps men have learned to be a little more self-policing when it comes to passing comments about women’s appearances to their faces – who knows? But interestingly, I’ve never been told “you’d never know” by a woman who is herself disabled or who has been through something comparably life-changing and body-altering. I think such women tend to understand how it feels to be on the receiving end of judgemental remarks about their disabled bodies.
I am sure that many of you reading this will feel that the intention behind the “you’d never know” remark is well-meaning or even complimentary. But I want to briefly explain why I find this remark upsetting and offensive and why – if you ever feel the inclination – you should probably think twice about saying it.
1. It’s a statement that minimises my experience
When someone tells me they’d “never know” I’d had a stroke I immediately want to tell them that that’s great, I’m so pleased for you! Because I certainly sometimes wish that I could “never know” I”d had a stroke, but unfortunately I do know, and I carry that knowledge around with me every day. My stroke is always present to me – it is a routine fact of me simply being in my body – whether you can see that or or not from looking at my face, or limbs, or judging the way I move or carry myself, is actually completely unimportant.
2. It’s a statement which says everything about someone else’s discomfort and nothing about me
When people tell me that “they’d never know” I’d had a stroke, I imagine they are somehow trying to say something kind or flattering in response to information about my body and brain that they find, for whatever reason, uncomfortable. But why should their discomfort be more important than my lived experience? What I most often hear in that phrase is someone’s rather clumsy attempt to squirrel their own discomfort away, and close a difficult topic down, by saying something that they perhaps assume will be taken as a compliment. “What? Really? You’ve had a stroke? Wow, well! You’d never know.” When I’m on the receiving end of such remarks, I often want to reply ironically that I am so sorry my stroke makes them feel a bit uncomfortable; that it feels really good to have my physical appearance judged by them, and that I’m so pleased to have successfully met their exacting criteria of what looking normal means. Because when someone says “you’d never know you’d had a stroke” they aren’t actually seeing me. They have simply seen their own version of normality and decided to judge me and my body against it.
3. It’s a horribly ableist statement
Just step back and really think for a moment what it means to tell me “you’d never know” I had a stroke. Because you are – right there to my face – letting me know that you have decided to assess my physical appearance against your own completely arbitrary criteria of how “normal” bodies should behave and look. And I passed the test! My body has not been found wanting! Congratulations to me on appearing – to you – completely normal! When someone says “you’d never know” I really want to ask them – well, how did you expect me to look? Would you assume my speech to be more slurred, my face to be more dropped, my body to be more wonky than it is, my limp to be just a little more pronounced? And if I were a little “more disabled” would I then also be a little “less normal?” What would you say in similar circumstances to someone who does (from your judgmental perspective) look like they’d had a stroke. Would you commiserate them on their lopsided appearance and visible disabilities in exactly the same way you congratulated my body for it’s apparent lack of such things?
All three aspects of the “you’d never know” remark bother me, but this third point is the one that I honestly find the most upsetting and offensive. Because in telling me you’d never know I’d had a stroke, you are also telling me I’m somehow really lucky to not look disabled. Please imagine how that feels, as a disabled person. So to every judgmental, ignorant, well-meaning able bodied person who has ever made this offensive remark to me, I would like to remind you that all disabled bodies are completely normal, and completely beautiful in their many differences, whether you choose to see such differences or not.
KDD & Co 
Dear Kate,
In the many days since this post, it has affected me deeply. I felt many emotions while reading it. Perhaps it is the most thought provoking blog post that you’ve created. Today in The New York Times, I saw an article entitled,” What Do You Say To The Sufferer?” by David Brooks. For me, the article encapsulates a most intelligent and thoughtful response, in a more elegant way than I could say it. I’d like to share it here, with the following link: https://www.nytimes.com/2021/12/09/opinion/sufferer-stranger-pain.html. I hope you and others are able to access it. If not, I’d be happy to send the entire article to you printed out. Thank you so much for starting this conversation.
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I can somewhat, since i have not has a stroke understand your felling. I suffered 3rd degree burns on about 12% of my body and after people use to tell me “it could have been worse”. I never was able to reply to this. There is nothing to say other, yes you are right, I could have died.
I think people think they are making you feel better. 30 years later, I still don’t like the comment.
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I read this a little while ago and I’ve been mulling it over ever since. Wow what an interesting post. Lots of different perspectives. My late brother used to use sticks and a mobility scooter and he always said he felt embarrassed using it as people would look at him so he used to imagine it was a jeep!
We often had conversations about how people talk and behave towards other people. Once when I was with him a gentleman dropped his stick and I picked it up and handed it to him (as I would with anyone who had dropped anything) and he was unbelievably rude to me and said he could “manage”. My brother told him he was rude. I said to my brother, well we don’t know how people feel sometimes or what sort of day they’ve had, they may be in pain and he said, “I’m in pain but there’s no need for rudeness.” It has sometimes put me off offering help to someone who might need assistance for fear of offending them which is sad as I’m quite shy and have Aspergers so I really have to work at being sociable.
It was really good to hear from Kate things she thought might be helpful to say, because I understand what she is saying. Although sometimes I think people who say “you’d never know” are often not trying to be hurtful or are embarrassed but are probably congratulating you on what you’ve achieved since your stroke. But we are all different and what’s helpful to one person might not be to another, so perhaps it’s an opportunity to start a conversation to make people more aware of what others feel.
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My lovely brother recently said to me “well, despite everything you’re going through I have to say you look well”. He meant it as a compliment and I gladly took it as such. He cares full time for his wife who has MS, never complains and is always thoughtful and kind. But not everyone knows this which is why I could accept his compliment unconditionally. It’s not for us to know the background of all people making well intentioned offerings, and unless they are given in malice there can be grace in just accepting.
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To my mind, it’s always a question of who is being put first in such exchanges, Helen. Your kind brother clearly always has you, and your shared knowledge of your experiences (as siblings) to the fore when he makes such remarks. That’s sadly not always the case. And why on earth should disabled people ever have to accept the selfishness and ignorance of the able-bodied “with grace”?
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Dear Kate,
Thank you so much for this blogpost. This remark I hear often when I am ‘out’ with my disabled sister: Oh, I couldn’t tell/you would never know. Of course, they talk te me, not her. And I always struggle to give words to my irritation with the remark and why it upsets me.(and she does NOT look ‘normal’ according to the ableist standard) The struggle with her body and mind is always there and this type of remark erases that experience.
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Johanna — People’s refusal to speak directly to your sister is so painful and such a diminishment of her personhood. I have heard this kind of approach called “Third Person Invisible,” and I think it describes the cruelty perfectly. I often wish that the perpetrator of each cruel action could be made to see where and how it lands….
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I’m sure loads of people have contributed their own experiences of similar hurtful comments, I didn’t read through all of them. I find “you look really well” from my mother of all people to be particularly difficult. Every time I see her.
I am terminally ill, I have been given less than three months to live. Do I care what I look like? It doesn’t change anything.
I think she’s trying to reassure herself, she’s in denial about how sick I actually am.
I can’t bring myself to sit her down and force it down her throat, she’ll just have to come to terms with it eventually.
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your mother’s lack of acceptance (or understanding) of your situation is definitely not your responsibility, Sarah. Nothing should have to distract you from what *you* need in coming months – and this is what your mother should be focusing on too. I am thinking of you.
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I’ve just read through all the comments and want to add my thanks to all who have shared their experience here, as well as Kate.
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Thank you for your very honest and open post on this issue. I think sometimes people say what they think is helpful and encouraging, because they want to put a ‘positive spin’ on things, but which actually diminishes the lived experience of the person they’re talking to. I’ve dealt with some of that while going through cancer treatment and recovery, and also in the last year while grieving for my Dad. I loathe the toxic positivity of messages such as “just think positive and everything will be fine” because some days it just isn’t fine and trying to talk me into being fine is upsetting and dismissive of how I’m feeling. I blogged about it myself and the importance of others acknowledging your pain, physical or emotional, rather than trying to ‘fix it’ or pretending it isn’t there. I think so often once people have had a life altering illness but are now ‘recovered’, others around them just want to move on, return to ‘normal’ and almost forget it ever happened. But we live with the ongoing impact of that illness every day, even on our best days, dealing with a ‘new normal’. It is always going to be a part of who we are and to pretend everything is ‘all better now’ is to ignore a large part of our lives. Thanks for putting such a strong and important message out there.
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Dearest Kate,
Well said and ‘amen’ to that!!
I have never ever understood why people have the urge to say things like that.
I often get the question why I, 53 years old/young, use a walker? Well, it’s none of your business.
We are who we are, just people, just women, with our own personalities, strenghts etc.
Judge me for my behaviour or the things I say, but NOT for my looks or my helping aids.
Thank you for writing this, very much appreciated.
Big virtual hug from this side of the North Sea.
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A difficult to read, but very necessary post. Thank you for your perspective. My adult daughter is on the spectrum and is adept at ‘hiding’ her difficulties to fit in. The strain this puts on her already compromised emotional and mental wellbeing is immense. I often hear ‘you’d never know’, which saddens me for the very reasons that you express.
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lots of food for thought here. I had a stroke too about 20 years ago. I worked hard to recover as much ability as I could. Much of it was so that other people would not feel uncomfortable around me. ( I see the same now with my Mom who is 93 and refuses to go out if she needs an assistive device.) I always thought the comment was a compliment, but I am provoked by your thoughts that are clearly deeper than mine.
Thank you Kate for your thoughts on this.
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I work hard to to retain good physical function – why wouldn’t I? But I certainly don’t feel ashamed when I need to use a stick. I really feel we should celebrate assistive devices, and bring able-bodied people into that celebration. – because wheelchairs, scooters, frames and sticks are what enable people like us and your mum to get out and enjoy life. It makes me really sad to hear that older and newly disabled people feel ashamed of the wonderful objects and technologies that have been designed by brilliant creative people just to help our bodies get about!
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My sister with MS decorated her cane with lots of stick on bling!
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Thank you for saying this.
I’ve followed your blog since you released Owls, and worried with you over your stroke, cheered with you on every minor and major achievement to getting control of your body again. I’ve cried while reading about the heartache you’ve felt when you had to leave the life you had built as an academic behind, and then filled with joy at you embracing the new life you could have and how wonderfully happy it seems to make you (while knowing you have private bad days and months.)
I’m currently recovering from a severely broken leg from a motorcycle accident. I’m not yet 40, but had complete knee reconstruction and am learning to walk again. I can only imagine the sort of comments I’ll get in a year when I can be back to mostly doing everything I did before. I live with depression, and always hear “I had no idea! You’re so cheerful!” and I hate it. I feel it’s similar to “you’d never know” with your stroke. You don’t see the bad days hun, you don’t know how I should be, and you can’t see my brain.
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Solidarity with you, Mandy x
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Hello Kate – a very interesting piece which explains clearly how you feel and what your lived experience is. Of course, people who haven’t experienced disability at first or second hand wouldn’t know this. And people do feel uncomfortable when confronted with something which is really unpleasant – no one would wish a stroke on themselves or anyone else. I think this is the root of the ‘you’d never know’ comment. they’ve also probably never thought about disability and the comment shows a knee-jerk reaction. Which is kindly meant by them.
Can you describe things which people could say which would help the conversation to move forward in a positive way or to ‘put the subject away’, because people often might not know whether you want to talk about your stroke or not. As you are willing to talk about your stroke on this site, it would be really helpful if you could guide the rest of us how to talk about it. Or not.
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I honestly think the main thing is just to put the other person – and their experience – at the centre of your response: just as you’d do, perhaps, when speaking to someone who has suffered a bereavement? It is absolutely fine to say “I’m so sorry” or “that must have been hard” or even something encouraging or complimentary like “you must have tremendous strength and courage to go through that,”- these are all remarks that show you are thinking about the other person, putting them first, and allowing them, if they want to, to say more about the situation – or to move the conversation on. Where it differs from bereavement, I think, is that most people you’d encounter in this situation are perfectly comfortable with their own disability – and completely used to talking about it – because they live with it every day! Though the subject may be uncomfortable for you, it is very unlikely to be so for them – and in this situation your own discomfort is really a very small thing to put aside. On really ‘bad’ responses: I’ve often encountered what I think of as a particularly cowardly and self-centred reaction to my situation – in which the person immediately refers things back to themselves and their own (groundless) fear – “how scary! Could this happen to me? might I have a stroke? should I be checked for a hole in my heart?” This is also a knee-jerk response, but unlike the ‘you’d never know’ remark, it never seems well meant, but just horribly self-centred. Best avoided!
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Thanks for your reply, which is helpful. I really think that difficult conversations are something which we should teach people about in school, maybe in PSHCE lessons, because otherwise they trot out something inappropriate. Maybe people need to role play these sort of conversations, practise them and have time to think about what effect saying this or that will have. I honestly think many people are caught on the back foot, unprepared and would be genuinely horrified to find they have caused offence and upset.
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I so appreciate the detail with which you documented your stroke on this blog. A dear colleague of mine had a stroke within days of yours. Reading your blog and learning about your experience helped and educated me enormously so I had much better understanding.
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I wish there was some kind of international hand sign. Like covering my ears with my hands.
“I don’t have to listen to this shit. It’s really hurtful and you have no idea”
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This post really resonated with me too. I have multiple sclerosis. I have had five “relapses” affecting my sensory perception and eyesight (ranging from going totally blind in one eye to double vision to nystagmus, which affected my depth perception and made it very hard to navigate my world). I recovered from all of these but there is still damage to my brain, unseen by anyone except the radiographers at my annual MRI. I take immune suppressant medication to decrease the chance of further relapses. But damage can go on in the background so those MRIs are often the only way of knowing what shape my brain is in.
I am very active, pushing myself to complete marathons and ultras. But there are still days I can’t get out of bed, or have to go back to it! On days like that I fell so judged by those around me, like “well maybe you shouldn’t push yourself so hard”. But I can’t help but think that if I didn’t, I might actually end up worse. And if I didn’t, I would be denying myself something I really enjoy.
I got a “you’d never know it” type comment from the newest person in my team – a man in his 60s who won’t get vaccinated, wear a mask or even take a lateral flow test on days he comes into the office… I did my very best to explain because I really need him to understand exactly how vulnerable I am!
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Oh my, Sarah – I so completely identify with everything you say here – especially regarding the dreaded ‘pacing’ in reference to something that itself keeps you healthy and happy. Your inconsiderate colleague could certainly benefit from a little self-reflection!
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I so appreciate your perspective on living with bodies that have “been through something,” Kate. Not only that, I get extra energy from the peppery comments of others here who share that experience. For years I have battled migraine, knowing that demanding accommodation for my invisible condition might endanger my job. Finally, in my very early retirement years, I’ve found some blue-light-blocking glasses that help a great deal. However, they are large and unusual to look at, and everyone who sees me knows there’s “something wrong with your eyes.” This means I’ve gone from a “you’d never know” to a “what’s wrong with you?” To me, these are two ends of the same all-too-visible condition: Insensitivity!
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I appreciate your good words on this, and will remember them.. As always, I am impressed with your courage with what you write, and how you live… You are an amazing human being… Brava! I am always cheering you on….
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thank you, Susan x
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I always try hard to understand how the person I am talking to feels in their own skin. I always tell people who comment/complain/or judge someone…You have NO right to say anything about them unless you have walked in their shoes and lived in their skin for a while because you have NO idea what their life is like.
Whilst going to see a specialist for my crushed wrist many yrs ago, I had to deal with an intern who was ‘absolutely brainless’ when it came to talking to patients. During the appointment he leaned into my personal space and told me ‘YOU just don’t understand! You are very sick and you need another operation! And YOU WILL GET it, when you finally realize just how sick you are and you that have NO CHOICE because you will never get better without it’! My answer was to wave/flap/maneuver my hands in front of him and say ‘Would you say a person with this injury shouldn’t be able to do this, or this, or even this and certainly not this?’ He said ‘Well yes, I just can’t explain that! You absolutely shouldn’t be able to do any of those things, no. It doesn’t make any sense at all!’ He shook his head from side to side and repeated ‘It just doesn’t make sense at all!’
I replied ‘Well, I completely DISAGREE with you and I will never get ‘your operation’ because I have healed my hand to what it is now with a lot of darn hard work and I will continue to get even better because I BELIEVE I will and I will do everything I have to and all the work it takes to get even better than I am!’ So he said ‘You actually THINK you can do that, just because you ‘believe’ it?’ My reply as I left the room was ‘I HAVE done it as YOU have just seen for yourself and I will continue to do it! YOU have just seen what belief and hard work CAN DO!!! And I won’t be back for your operation!’
The air was blue beyond belief when I got back to my waiting husband. He said ‘Well, then it is a good thing he had someone like you when he said all that crap. I answered ‘But what about the poor soul who believes everything someone like him tells them and will go under the knife when they might not need to and could possibly get worse because of it? It isn’t the answer for everybody. It doesn’t bare thinking about.’
Thank you for sharing this with the world Kate. A lesson for all…think about the person in front of you and be kind. Words matter! And thank you again for raising awareness of just exactly that.
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Thank you, Kate, for this post. I really needed to read it. I have GBS and always “feel” it, no matter how I may look to others. When they say it would never be noticed, I feel unseen, my experience seems invalidated, and I feel another impediment develop, i.e., an inability to connect with others because they will never be able to understand my experience since they can only judge by outward appearances. For me a comment like “you’d never know” doesn’t so much feel judgy, as it feels alienating.
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This was very interesting to read, and good to know. I thought about it a bit and I don’t think it would ever occur to me to say something like this. I would be more inclined to ask the person what that experience is like, as I am very curious. I don’t know if this is appropriate or not, but I tend towards wanting to know how other people feel. I am aware, however, that people in general are mostly thinking about themselves, and often make careless comments without meaning any harm. Your thoughts about people trying to make themselves feel comfortable rings true to me.
Thank you, as always, for your wonderful writing. Yours is one of the few blogs I read. I am grateful for it.
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Thanks, Stephanie. I think curiosity is always good – I certainly never mind being asked questions
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I have sarcoidosis of the lungs. An autoimmune disease .My first encounter was 41 years ago. I have had periods of good health but now I cannot walk very far without being breathless. I go out in my car with my beloved Labrador and park in a disabled bay. I have been asked to move because it is for disabled who show their problems not for us who fight our problems internally every day. My face does not advertise my internal pain. Friends have asked me to limp. – Look disabled. Thank you Kate for raising this subject.
Jennifer.
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At first reading , I didn’t fully understand your outrage. After further consideration, I realized you are absolutely correct. Thank you. Words matter.
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The only time I can see where using that phrase would be a positive thing would be in the context of a work project or initial try at something as in, “You would never know this is your first time doing this – well done!” What our bodies look like is nobody’s business. That being said, I am the proverbial bull in a china closet at times and this was good information to have. I don’t ever want to hurt or make anyone feel “other!” I’ve felt that way far too much myself for my own reasons and it’s the worst. Not that it is your job to educate me, but I am grateful that you did. Thank you!
Joan
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“Yes, but you manage so well I hardly notice it.” It’s another comment that makes me grit my teeth.
With you all the way on this Kate!
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I think ‘you’d never know’ is just a strange way of saying ‘I didn’t know, I am surprised by that information’. I imagine if someone says that, it was because you had to actually tell them you had a stroke. I would say its not judgement, its surprise. (mostly), as I am sure there are some situations where it was judgy or nasty. I will take note and make sure not to use this phrase.
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Hi Kate,
I also had a stroke in 2013 which, fortunately, left me only with some slight damage to my right upper arm. Although my hand often gets prickly and my upper arm feels like it’s weighted. It’s a hard feeling to describe even to my neurologist who said it should go away in time. Almost 9 years later and I guess I’m stuck with it. I am grateful to have come out of it as well as I did and still have lots of strength in my hand — enough to arm wrestle with 😊. I am especially fortunate to be able to knit.
I thought you might appreciate this little story. I am Jewish and often when I meet new people who find out I’m Jewish, they will say, ‘Funny, but you don’t look Jewish.’ It’s offensive as really, what does Jewish look like.
I love your blog and some of your knit offerings. Keep up the great work and keep enjoying both good health and that beautiful country you live in.
Stay well and take care,
Doris
>
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This made me laugh, dear Doris. Post-stroke solidarity with you – we knit on!
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Your comment made me laugh so much, Doris. My youngest son (who is not Jewish) is constantly being told that he “looks Jewish”. He has travelled extensively and all over the world he has been embraced as a “fellow Jew” and even at University he was asked his opinion on many Jewish subjects (he studied Social Anthropology)!. So clearly, whatever the perceived look is my son has it!!
Best wishes
Julia
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Crikey – what an emotional roller coaster reading this! As a disabled person, I have actually been told “but you look so normal – it’s just when you stand up you look different; it’s such a shame”. And I have actually felt shame for most of my life – shame that I can’t walk as fast or as far as ‘normal’ people. Having said that, my disability hasn’t stopped me doing anything I want to do… apart from dancing Strip the Willows! Thank you for this thought-provoking post, Kate.
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keep on keeping on! x
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I have been reading your blog for a long time, and might have thought something along these lines, although I would have stopped short at saying so. Simply meaning that having seen people in long-term care (for example) as a consequence of stroke, I was glad that this had not been your lot. Not to minimise what you have suffered or the daily challenges you face, but to be glad with you that you are able to enjoy walking and outdoor pursuits you love (while aware of the months and years of hard work in recovery which enabled this). Your post has made me think.
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thanks, Ann. I think that the experience of seeing and treating people who have fared quite badly after stroke explains, to an extent, the frequency of the remark to me in healthcare settings. I am definitely aware that comparatively I have fared very well – though I do have my difficulties! This doesn’t make it easier for me to hear the remark, though – mostly because I then go on to wonder how these practitioners regard or respond to more severe disabilities than mine – and how all of our differently disabled bodies are continually judged in such settings.
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It’s hard to convey the depths of my gratitude for your essay here. I have so often *thought* that demeaning sentence, imagining it to be a sort of compliment, never realizing its implicit demand that everyone be “like me.” I am humbled and chastened by all that you have shared, all the more so because I have followed your blog from its inception and because I have read Handywoman twice. One would imagine that reading all your writing in those pages would have educated me, but sometimes a person (me) needs to be hit over the head with a very, very pointed object. Thank you, Kate. Thank you. Thank you.
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Hurrah for saying and analyzing so clearly how that statement undercuts the ground . It says that “appearance” is all that is important, not reality or relationship.
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I appreciate your essay regarding this. As a completely able bodied person, I was a bit shocked to discover a person with a disability would find a comment, such as this, offensive. I think most able bodied people (although I hate to generalize) might say this because they are impressed with your strength, and how obviously hard you worked to overcome and work through such a difficult life challenge. I don’t think anyone would say this intentionally trying to be insensitive or uncaring regarding the situation. I know I wouldn’t.
I agree that there is probably a degree of being uncomfortable, and not knowing what to say. Not wanting to pry into someone’s personal and possibly painful past experience, but also not wanting to completely disregard the situation. I think every person on this earth can relate to periods of their life when they just wanted to be viewed as “normal”. I really hate that word, it means something different for everyone, but I think most people can remember times in our lives when we wanted to be just that. Just wanted to be able to blend into the crowd and not be noticed, because something is wrong. Not hurting, or struggling in pain, of body or mind, to find our way though each and every day. I think this is what most people are referring to when they say these words. Essentially, more awe and admiration, less disrespect and indifference.
I obviously can’t speak for everyone, but for myself, if I ever said something like this to a person with a disability, I am truly sorry to have given the appearance of minimizing their pain and struggle. It was not my intention.
I love reading your essays. Thank you for all the insight.
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This post made me sit up straight and think. at first it does seem like a compliment. reading your thoughts gives it a whole other perspective.
as a nurse (old and retired) i don’t believe i have ever made a comment like that. just take people as they are. no need to comment at all.
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My sister has MS and when a friend told her she looks “normal” she took it as a complement meaning she works daily with exercise and food to try and combat it. We all try to do our best with the knowledge at hand and often not experiencing a stroke means we do not have that knowledge to impart. Part of your strength lies in projecting yourself the way you actually feel or wish to heal to. You are an inspiration!
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Thank you so much for sharing this! I 100% empathise as I have a disability (mobility) yet I get told by strangers “I bet you aren’t even disabled”. I have spondylitis and am in a lot of pain, yet according to strangers, as I said, I have nothing wrong with me. I used to be a runner and a gym bunny so being disabled now makes me sad as I can’t do what I used to and to have to deal with others peoples ignorance is even more upsetting. But what can we do against ignorance? Wish there was a cure for that. Try living a week in our bodies and they would be broken people.
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Education is the cure. Reassurance that if it happened to them, we or others like us would be there to support them! Drive away their fear and educate with reality and clarity.
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Thank you for taking the time to write this.
The concept of “normal” irks me no end, particularly when it is behind “well meaning” phrases like this, and you’ve articulated a few points I have had going round my head on the matter for a while better than I ever could. So thank you for that too.
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I find it odd that you think everyone who says “you’d never know” is being “judgemental”. To be judgmental, to me, means someone is being somehow negative in their thinking, or criticizing. If you think that everyone who makes such a comment is trying to be offensive, then your reaction tells more about you than them. Why are you looking to be offended, thinking that everyone is looking at you in a negative way? Why can’t “you’d never know” just mean, “You have done so well to recover that no one would ever know you’d had a stroke”? Also, why are you still defining yourself as your stroke? Why be the condition or disease? For that very reason, I never joined “support” groups after my breast cancer. I didn’t need to keep talking about my cancer; I am not the cancer. It does not define me. I am not Kathy who had cancer, just like you are not Kate who had a stroke. We are just us.
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But I *am* Kate who had a stroke, Kathy.
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Sure, just as I am Kathy who had cancer. But why would you want to be known only by your disability or disease, because that is what happens when you don’t just be done with it and get on with life. So – you have mobility issues (and other things), and I have just one breast – so what? We’re still here and we live on. Look forward, not backwards.
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you could accuse me of many things, Kathy, but not, I think, of not getting on with my life or keeping moving forward! I think – as many comments on this post reveal – that it is generally important for people to think about, and reflect upon, their own attitudes to disability – and it is in that hope that I occasionally write posts like this one.
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Actually, don’t look forward or dwell on the past, but look with inquiry, compassion and understanding and eventual acceptance as time goes on, but live in the present, coming to terms with reality and what has befallen us, without judgement of being good or bad, it just IS. Then try to live well with what is. In this present moment. In this life. For this is all we all of us ever have. Acceptance not denial is key here!
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This resonates, Kate. Mum always had rosy cheeks, even when she was ill. Consequently she was always thought to ‘look really well’ – even by medical staff (whom you might have thought should have been able to see beyond immediate surface appearance).
For that matter, I now use a walking frame because arthritic knees (I’m ‘On the List’) but sometimes really have to remind even my husband that I CANNOT walk quickly or on uneven ground (‘uneven’ meaning less than fairly flat!) As for stepping over things . . .
That said, I don’t consider myself disabled. I know people who really are. I just have some difficulty with mobility, like so many in their 60s.
But thanks very much for the heads up. Sometimes even the most sensitive among us, which I’m nowhere near, need reminding.
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Hi Kate,
Thank you for sharing.
I have two disabilities, both are pretty much invisible to the common eye. I appreciate you sharing your experience very much. Thank you for being so vulberable and open with it. It’s inspiring.
Here in the Netherlands the rules about wearing masks have started again. I can’t wear one. To me it’s strange to be reminded of my disabilities by complete strangers every time it comes up and to have to explain myself. I don’t have to be reminded of them. They’re there every day I wake up.
Anyway it’s another invitation to become more comfortable in my own skin and be more of me regardless of what’s going on around me or what other people say. It’s not always the easiest and funnest thing to do. Fortunately there’s knitting and reading inspiring blogs amongst things!
Sending hugs. Once more thank you for sharing and speaking up!
Warmest wishes! Marieke
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Hugs to you, dear Marieke x
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I’ve spent my life with a disability, and people forget about it, which is fine. When people say “you’d never know” to me, I realize that it is because I function well in the world. I don’t find it upsetting or insulting, but see it as a commentary as to how well I function with it, not because of it. Perhaps it is different when one becomes disabled or limited in function older rather than having a disability since early childhood – being older when becoming disabled means you have memories of “before” and “after.” I don’t. I remember the trauma, but have spent my life adapting. I adapt. I work our problems on how to do things, and move forward. Yes, I have moments of rage and frustrations when I cannot do something or am limited by my disability, but then the reality is that a pity party is not what I want for me. So, perspective from another viewpoint, but I also do understand how you feel, although with a different reference point in time.
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Really excellent post, Kate. Once, decades ago, when I was as first diagnosed with Bipolar Disorder, it talked to my neighbor about it. She said, “Oh well, everyone has something!” I remember feeling so incredibly disempowered and felt her comment was very dismissive. Thank you, Kate, for this post.
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I have always admired you utmost bravery in the face of what must have been a very disabling experience, especially for someone whose work involves handicraft, creative design and imagination. I, too, am slightly disabled by a degenerative muscular condition, and sometimes on bad days my face slips downwards on the right. The number of times someone has turned to my companion and said (as if I were absent) “has she had a stroke?”
I feel so blessed just to be alive, but feeling judged as you do when a chance remark seems to suggest that we are in some way defective, is appalling. You are right to draw attention to the insensitivity of such a comment. Because even when my condition is invisible, I still have it, just as you still have all the after effects of your condition.
I am enthralled by the beauty of your surroundings, by your wonderful designs and your gorgeous dogs and probably your gorgeous husband who tells your story through his photographs. So praise be for all of that.
I belong to a generation that was brought up NOT to make personal remarks, I wish we could go back to an era of respect for other people and their feelings.
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Perfectly said! Thank you☮️
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I think I might put your first reason even more strongly: it denies your lived experience. You live in the body which feels the effects of your stroke every day.
The surgery I had nearly three years ago saved my life. It also left me in near continual pain. It is a fact of my daily life. It’s also invisible to anyone but me. I say this not to evoke sympathy, but as a reminder that you may not see what someone else is experiencing. That does not make that lived experience any less difficult or painful.
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Insensitivity abounds. People are people, some with good manners and/or thoughtfulness, others that don’t even recognize good manners or thoughtfulness. How I look has nothing to do with car accidents, teenage deaths, family wholeness. I’m told stories of these subjects regularly, often as current events, many times by people who know what happened. I’m sensitive to these subjects because they are part of MY story. I accept that the insensitive stories and statements will continue because this is a very peopled world I live in. The way I look reveals nothing about who I am. I guess we can all say that.
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Thank you for putting in words how I feel !!! I have Early Onset Altzheimer’s and I hear something similar all the time.
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Well said.
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As a disabled woman, this post really expresses what I would like people to know. It may be a little phrase but has big implications and I wish more people understood that one does not have to look disabled to be disabled. I use walking sticks just so other people don’t presume every works as it should. Thanks for expressing this point so well
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My first two years as a nurse were in a burn unit. Statistics show that burn patients who are not visibly burned have a much higher suicide rate and much lower coping skills than those who have visible Burns because if people can’t see it they don’t take it seriously. Having had 2 minor strokes myself, with no deficits, I also am amazed that health professionals make that comment. You’re an amazing woman in all aspects.
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I try to be very aware of this sort of thing because of yet another aspect that appears in my daily life, that of a non-visible chronic disease. It’s cropped up a lot in the past two years, of course, in hearing various acquaintances minimise health risks and the need for vaccinations, not realising there may be others around them who are at much greater risk…
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Thank you for this insight. But, I’m curious, what would be an appropriate thing to say? Now I’m concerned that anything I say will be misconstrued. Is it ok to say, I’m sorry you’ve had to go through such a difficult situation.” Or, “ I’m glad to see you are doing well”. Or do I just say nothing at all?
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saying “I’m sorry you went through that” or just “I’m sorry” is an honest way of expressing empathy and human connection. It’s something I always appreciate hearing.
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Thanks a lot, you have described it wonderfully what this statement means to you. I admit I was only aware of some of the aspects. I am convinced that you have raised awareness to this topic.
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Thank you for this post. I do understand so very well what you mean. As an almost deaf person that keeps up very well in the so called normal world, I hear so many times that they can’t see or hear I am deaf…so many times I wish they could go through it for just one day ..
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Hear hear …….. my son has Down Syndrome, and I’ve been told I’m lucky people can see his disability as though its a shortcut for how to behave towards him ! Lucky that he can instantly be singled out, lucky that he can be stared at, lucky that preconceptions are made before he’s had chance to open his mouth, lucky that since the day he was born he’s been prodded and poked physically and mentally .And note , its me thats lucky, thoughtless words can’t even name him. We are all who we are and whatever that means we should all be accepted for our whole selves.
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I have a more subtle version of this when my disability is ‘forgotten’ by people, such as one of our managers who needs to be reminded Every Time we have a team event, of my needs ffs 🤦♀️ It’s just so wearing and I do look forward to retiring.
Thank you for raising this, Kate ❤️
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Thank you for this very insightful post. I have a visual impairment and an autoimmune disorder that affects my joints, both invisible to an observer. Reading your post resonates with me.
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Thank you for your post! What a strange phrase that is for a non-native English speaker! I’m assuming the first “you” means simply “anyone”, like “Nobody would know Kate has had a stroke”. But I can’t help but read it “Kate herself wouldn’t know she has had a stroke”, which feels extremely insensitive. I of course appreciate and agree with the points you are making, but I’m just linguistically curious: is it perhaps this first “you” what makes the phrase especially upsetting bizarre? I mean, do you as a native English speaker just understand it as “you=anyone” but the hidden “you=Kate” meaning perhaps bothers you on top of all the other things, at a less conscious level?
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As a native English speaker – the ‘you’ in ‘you’d never know’ does indeed mean ‘anyone looking at Kate’.
But then, appearances can be so deceptive and at times totally unrelated to a person’s experience, so . . . So what?
I feel sorry for the Instagram Generation, both male and female, who are being fed ‘optimised’ photos of what they ‘should’ look like. Which is rubbish when you think about it.
Trouble is we rely so much on what we see with our eyes, and too often don’t bother to look any deeper than the immediate surface.
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Oh my gosh, Kate. This is so resonant. My mum had a stroke some years ago and has said exactly the same. She would have none of it.I have Lymphoma , and because I am well enough not to have treatment, and I look well, I am told many times. ‘You don’t look like you have cancer at all’ ‘You look so well’ or even more frustratingly to my husband beside me as if I cannot speak for myself, ‘Doesn’t she look well on it? and , yep…’You’d never know’. Well, I know and some days getting out of bed to crack on takes all my now limited energy! I agree with everything you have written, and these judgements (it’s what they are) are mostly from other woman. Thank you so much for this post, it’s made me feel even more fierce!
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Thanks so much for your clarity and bravery in highlighting this. Many of us need a reminder of how self centred we can be,
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So valuable to hear this for someone who is not disabled. Great food for thought. Thank you!
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Oh my soul, this so resonated with me. My son has Autism but like many Autistic people there are no outward signs of his challenges. I can’t tell you how many times people (including many professionals who should know better) have said, “He’s very good-looking. No one would guess he’s Autistic.” Perhaps they see it as a compliment, but it’s always hurt me deeply. His Autism is a part of who he is and by denying it or degrading it, you degrade him and his existence. Yes, he’s good-looking, but does that count for anything? Does that balance or trade-off his Autism in some way? I often want to respond by saying, “No one would guess you’re ignorant, but there we are.” Thanks for another great post. Stay strong. xxx
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“No one would guess you’re ignorant, but there we are” – exactly. I have so often wanted to use a similar reply to ignorant jerks. Instead I settle for a change of subject and a blank stare to the side of the foolish commenter.
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As someone with disabilities, I wanted to say thank you for this post. It’s as if you have read my mind. I never feel lucky. Lucky that a patient hurt my neck to the stage I have several prolapsed discs in my neck. Lucky I don’t show my pain ever day. Lucky I get to decide what to do each day and consider if it’s worth using up my energy. I could go on but I’m grateful for your post
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I have mild cerebral palsy affecting balance, co-ordination and my left side. I am now 68, I have a husband, an office job and raised 2 sons. I consider myself fortunate but would never judge others by myself. I so relate to your comments as no-one knows the effort and accomodations that have to be made.
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