For once, this isn't about the Welsh language, which is the usual context for this expression - as in, "I've got nothing against the Welsh language so long as it is not forced down my throat" (which being interpreted means, roughly, "so long as nobody speaks it in public or makes me see it on signs). I have something more literal in mind here.
Once only during my long stay in hospital did I see an agency nurse load a large spoon with a lot of food (veg, gravy and meat) and try to cram it all into the mouth of an elderly patient who had tried to decline it. Some of my shock must have shown on my face, as the nurse said, "well, what am I supposed to do? She is losing weight!" Two things were bothering me (apart from the fact that I thought it unkind and undignified): if she had done it to me I might very well have choked; and, where did the memory of our school dining hall suddenly spring from? I genuinely can't recall anyone doing this to me there, but perhaps they did and I had suppressed the memory?
Looking back, the generation born in the 1920s and 1930s has quite a lot to answer for in terms of coercion around food. By the time I reached primary school in the mid 1960s food was fairly plentiful (but not always very nice). Rationing had long since finished. This was hard for those who had lived through the war to adjust to, for to them it was a recent event, while to us it was a distant story about a time before we were born. Didn't they love trying to make us all feel guilty, though! "We would have been very grateful for that", "That's a whole week's ration of meat for a family you've got there", and, in a desperate attempt to get more up to date perhaps, "starving children in Africa would be glad of that". Hardly surprising that the whole atmosphere around eating was a minefield. Enjoyment was never expected: just non-stop controlling behaviour and guilt trips. (I don't pretend to understand the issues behind eating disorders, which seemed to burst out in the 1980s, but I can't imagine that all this would have helped).
If we had been genuinely hungry we would, of course, have eaten the food. The area where my school was was not wealthy, and the pupils were from various backgrounds, but most were certainly not going without at home.
The food really was horrible. We were not allowed to bring sandwiches, or go home for lunch, or ask for smaller helpings. There was no choice. We were usually not allowed to leave anything. (One girl in my year had a number of food allergies and was allowed to bring her own food from home. How we envied her! But another girl I knew actually had to leave mainstream education and go to a special boarding school for the same reason, incredibly.) Everyone on a table had to have finished before they were allowed to go, so a child could be made unpopular with the others who were deprived of their time outside if they made a stand.
Many people record similar experiences of school dinners. Here's a brief list of the worst:
Cabbage boiled for a long time (my memory says all morning, but that can't be right, surely? anyway it was tasteless and smelly).
All the vegetables overdone.
Cheap meat full of large stringy veins.
Corned beef hash! Bleurgh
Toxic dark gravy poured over all of it.
Endless tasteless piles of mashed potato with everything.
The puddings!
Sago. Tapioca.
Lumpy pink blancmange. Pink custard.
Lurid thick yellow custard, with lots of skin and lumps, again poured all over everything.
The very worst, something they called caramel pudding, which bore no resemblance to the real thing but was like the blancmange, only greyish brown.
For the record, I liked liver, the fruit puddings, rice pudding, semolina (just about - this came with very sweet rose hip syrup) and some of the stodgier traditional ones, but this was rather dependent on whether I could manage to grab my plate and run before it was swamped with custard.
I didn't come from a family which went on demos and defied authority, but I did actually organise a protest march, with placards, round the playground, and learned that while plenty agreed with me and were willing to join in at first, they would melt away at the appearance of anyone in authority. It was a more authoritarian age.
My finest hour came when we were served the dreaded grey "caramel" pudding twice in one week. Nobody liked it. (We even discovered that the teachers, who got the same food but in a separate room, were also not eating it.) I refused to eat it, the whole table was kept in for the whole lunch hour (thus ensuring that I was the most unpopular child in the school). They were allowed to go when the bell rang for the end of the lunch hour, but I was not, and so began a grand stand-off with dinner ladies who no doubt were due to go home, an echoing empty dining room, and me not budging. Eventually one of them had what she thought was the killer argument : "If you won't eat it you must take it to the headmaster and explain why". "Oh, yes", I said, and off I went with my plate to seek him out. I was obviously impervious to teacher/dinner lady sarcasm and empty threats, as it never occurred to me that she didn't mean it. Everyone was supposed to be terrified of the headmaster, an "old school" teacher from the Valleys who was rumoured still to be using the cane.
Alas, he was listening to a radio programme, and waved me away impatiently without hearing my grievances - but the dinner ladies had at last realised that they weren't going to win this one, and let me go. Around 20 years later my mother bumped into one of them in the town and heard the whole story again, still being talked about - "and we couldn't believe it, she went to the headmaster with her plate!"
So, while memories are one thing and might raise a smile when you're in need of distraction, please, please, don't make me actually relive eating some of this stuff when I am helpless in an institution and no longer have any control of the situation. For some strange reason this kind of food gets described these days as "comforting". It was unpleasant at the time, probably impossible to recreate now anyway, and the surrounding issues of guilt, bullying and control which went with it are anything but "comforting" to remember.
Saturday 22 February 2020
Sunday 16 February 2020
Chronic illness: unexpected extra hazards. 1, Voice recognition
"You can use voice recognition to access your account", they said. "No, that wouldn't work for me", I said, or rather croaked. "Oh, but it's more secure than remembering passwords and access codes and memorable information," they said. Me: "croak, whisper, cough". Them: "I'm sorry, could you repeat that?"
One of the most inconvenient aspects of the combination of chronic conditions I have is the unreliability of my voice. After having pneumonia last year I completely lost it for over a month, and that was very difficult. You can't respond to people who are calling to you from a different room, or walking away from you while asking you a question, or not looking at you when you nod or shake your head. Phone calls are not always possible.
My voice has returned, but it isn't great. It is non-existent first thing in the morning, it improves a bit during the day, it is not great in the evening. Sometimes it suddenly returns at full strength and it is then too loud and sounds aggressive. Sometimes what comes out is a weird bark like an angry duck. Because people can't understand me I am constantly being asked to repeat myself, and as talking can make it all worse I am learning not to initiate unnecessary conversations or make light-hearted throwaway remarks that were only mildly amusing in the first place and don't stand up to multiple repetition.
Voice recognition is one of the tech industry's new toys, however, and none of the institutions investing in it seems to want to hear about the downside. I would like to think that, happily, there are not many people living with this annoying and inconvenient condition, in which case I will be in a minority, shut out of accounts (apparently even HMRC are using it), and maybe the whole Internet one day.
One of the most inconvenient aspects of the combination of chronic conditions I have is the unreliability of my voice. After having pneumonia last year I completely lost it for over a month, and that was very difficult. You can't respond to people who are calling to you from a different room, or walking away from you while asking you a question, or not looking at you when you nod or shake your head. Phone calls are not always possible.
My voice has returned, but it isn't great. It is non-existent first thing in the morning, it improves a bit during the day, it is not great in the evening. Sometimes it suddenly returns at full strength and it is then too loud and sounds aggressive. Sometimes what comes out is a weird bark like an angry duck. Because people can't understand me I am constantly being asked to repeat myself, and as talking can make it all worse I am learning not to initiate unnecessary conversations or make light-hearted throwaway remarks that were only mildly amusing in the first place and don't stand up to multiple repetition.
Voice recognition is one of the tech industry's new toys, however, and none of the institutions investing in it seems to want to hear about the downside. I would like to think that, happily, there are not many people living with this annoying and inconvenient condition, in which case I will be in a minority, shut out of accounts (apparently even HMRC are using it), and maybe the whole Internet one day.
Saturday 8 February 2020
Hospital food
Hospital food is, like most things in the NHS, free at the point of service. You will not be presented with an itemised bill at the end of your stay. It is plentiful (usually) and the feat which the staff accomplish with what must be a small budget, getting so many meals delivered throughout a large building, is amazing. Canteen quantities but without a canteen to do it in!
Having spent a long time in two NHS hospitals during 2019 (on 6 different wards altogether), I had plenty of opportunity to try out most of the menu, which runs over a fortnight and starts again (this does begin to pall if many weeks go by). There are variations in how it is presented (whether you get to choose in advance, for instance) even within the same hospital, and some things seem to be more available on some wards than others.
Roughly, what you can expect is breakfast which is not cooked, apart from porridge, except at weekends when there are a couple of cooked options; a supply of tea and coffee throughout the day (sometimes with cake and/or biscuits); full meals at lunchtime and teatime; possibly a later snack or a fruit trolley (depending on the ward!).
I have heard people comment that the food is "like school dinners". All this really tells me is that they are not former pupils of my school, Priory Road County Primary School, the memory of whose tapioca still has the power to make me heave. There is an element of truth in it which I think comes from more general British catering habits, which go back beyond school dinners ca. 1950-1980 to the wartime British Restaurants and perhaps to workplace canteens, now largely gone, but otherwise it is an unfair comparison.
Here's a very quick summary of the things I liked: pork casserole, the vegetables which accompany the many roast dinners (the meat was less appetising - lamb probably the best), omelettes, soup made on the premises, Friday fish and chips, ice cream, a pasta dish, fruit pies and crumbles. The sponge puddings and cakes were also good but about twice the size of anything I would usually eat as a dessert. While I was there they introduced Glamorgan sausage, which was splendid (especially considering that there is not a great choice for vegetarians). Unfortunately none of the staff or other patients seemed to have heard of Glamorgan sausage, so there were some disappointed would-be sausage-eaters. (This is where seeing the menu, with an explanation, would have been useful).
The things I didn't like do, mostly, come back to those school dinner days: ubiquitous mashed potato (which, I know, most people do like, but I think a little goes a long way); sometimes you might get a strange mixture (omelette with gravy, mashed potato and Brussels sprouts, for instance); rather tasteless macaroni cheese; above all, that terrible British habit of drowning the pudding in custard and the meat and veg in gravy. I loathed school custard, but came round to custard eventually. Again, a little is enough for me, and I don't see the point of concealing the pudding so you have to go fishing for it. I never did come round to gravy, which people tip all over your food (not just in hospital) and in my view spoil it all, Asking for "just a little" custard doesn't work, though - you perhaps get it not quite up to the brim of the bowl but still too much. The actual custard and gravy in hospital are vastly superior to anything served at my school, but the memory lingers on.
The debate about funding all this has been raised as another area in which something at present free could be salami-sliced off in an attempt to reduce costs. Elderly people, who grew up before the NHS was born, are often afraid of the potential cost of their hospital stay, and difficult to reassure on the subject. I saw one lady constantly reject food (and be told off about it, as she was losing weight) - and when she had finally understood that there was to be no bill for it, seize the dish with both hands and eat the whole lot very quickly, obviously hungry. If you feel you should be paying for it, there's nothing to stop you making an appropriate quiet donation, surely, without making everyone else afraid by introducing charges.
On the whole, then, a big and grateful thumbs up to NHS hospital food. There are always going to be some things people don't like. The menus are a little old-fashioned (average age of an in-patient is 84, or so a poster on one of the wards told us - that age group certainly seemed quite enthusiastic about the traditional dishes), and occasionally you could see where little corners had been cut (rice pudding and jam on the online example of the menu, but no jam ever in evidence). It is a reasonably healthy balanced diet. All cheerfully served by kind and patient staff. Diolch!
Having spent a long time in two NHS hospitals during 2019 (on 6 different wards altogether), I had plenty of opportunity to try out most of the menu, which runs over a fortnight and starts again (this does begin to pall if many weeks go by). There are variations in how it is presented (whether you get to choose in advance, for instance) even within the same hospital, and some things seem to be more available on some wards than others.
Roughly, what you can expect is breakfast which is not cooked, apart from porridge, except at weekends when there are a couple of cooked options; a supply of tea and coffee throughout the day (sometimes with cake and/or biscuits); full meals at lunchtime and teatime; possibly a later snack or a fruit trolley (depending on the ward!).
I have heard people comment that the food is "like school dinners". All this really tells me is that they are not former pupils of my school, Priory Road County Primary School, the memory of whose tapioca still has the power to make me heave. There is an element of truth in it which I think comes from more general British catering habits, which go back beyond school dinners ca. 1950-1980 to the wartime British Restaurants and perhaps to workplace canteens, now largely gone, but otherwise it is an unfair comparison.
Here's a very quick summary of the things I liked: pork casserole, the vegetables which accompany the many roast dinners (the meat was less appetising - lamb probably the best), omelettes, soup made on the premises, Friday fish and chips, ice cream, a pasta dish, fruit pies and crumbles. The sponge puddings and cakes were also good but about twice the size of anything I would usually eat as a dessert. While I was there they introduced Glamorgan sausage, which was splendid (especially considering that there is not a great choice for vegetarians). Unfortunately none of the staff or other patients seemed to have heard of Glamorgan sausage, so there were some disappointed would-be sausage-eaters. (This is where seeing the menu, with an explanation, would have been useful).
The things I didn't like do, mostly, come back to those school dinner days: ubiquitous mashed potato (which, I know, most people do like, but I think a little goes a long way); sometimes you might get a strange mixture (omelette with gravy, mashed potato and Brussels sprouts, for instance); rather tasteless macaroni cheese; above all, that terrible British habit of drowning the pudding in custard and the meat and veg in gravy. I loathed school custard, but came round to custard eventually. Again, a little is enough for me, and I don't see the point of concealing the pudding so you have to go fishing for it. I never did come round to gravy, which people tip all over your food (not just in hospital) and in my view spoil it all, Asking for "just a little" custard doesn't work, though - you perhaps get it not quite up to the brim of the bowl but still too much. The actual custard and gravy in hospital are vastly superior to anything served at my school, but the memory lingers on.
The debate about funding all this has been raised as another area in which something at present free could be salami-sliced off in an attempt to reduce costs. Elderly people, who grew up before the NHS was born, are often afraid of the potential cost of their hospital stay, and difficult to reassure on the subject. I saw one lady constantly reject food (and be told off about it, as she was losing weight) - and when she had finally understood that there was to be no bill for it, seize the dish with both hands and eat the whole lot very quickly, obviously hungry. If you feel you should be paying for it, there's nothing to stop you making an appropriate quiet donation, surely, without making everyone else afraid by introducing charges.
On the whole, then, a big and grateful thumbs up to NHS hospital food. There are always going to be some things people don't like. The menus are a little old-fashioned (average age of an in-patient is 84, or so a poster on one of the wards told us - that age group certainly seemed quite enthusiastic about the traditional dishes), and occasionally you could see where little corners had been cut (rice pudding and jam on the online example of the menu, but no jam ever in evidence). It is a reasonably healthy balanced diet. All cheerfully served by kind and patient staff. Diolch!
Saturday 1 February 2020
On having a chronic cough (2: the kindness, or not, of strangers)
I have already noted the anxiety which a cough produces among its witnesses. There is the often - well, mostly - unspoken thought that anyone with a cough is infectious and unthinkingly about to share the germs with everybody else. This really stems from lack of knowledge of chronic conditions and some of their unattractive symptoms. Everyone has had a cough at some point, and unless you are among the unlucky ones with one of those horrible (but NOT contagious) diseases your cough progressed through some disgusting stages and then got better. Therefore, you know all there is to be known about coughs.
People's kindness can be nearly as stressful as the hostility. I have lost count of the cough sweets pressed on me and the glasses of water thrust into my hand, "to soothe your throat". It would be in vain to explain that I haven't got a sore throat. Cough = sore throat, doesn't it? So I usually thank people nicely, but then I feel as if I'm under obligation to stop coughing, which can be difficult to do (without going into too much detail, a coughing fit means my airways need to be cleared, a process which is delayed but not improved by stopping to scoff cough sweets). People mean well, I know, but the end result is that I am hesitant to go anywhere.
The other thing I really can't do is talk much, or at all, from the start of a coughing fit until after the, er, "clearing of the airways". Trying to talk makes the effort worse and delays the process. I do understand that people are trying to check whether I am choking, but I am more likely to do so if I start talking at the operative moment, so better to wait with your questions until the moment passes.
Here is a gentle suggestion of what might constitute a list of Top Things Not To Say To A Complete Stranger With A Cough:
- That's a nasty cough you've got.
- Have you seen a doctor about that cough?
- You should take [X] for that cough [or any other unsolicited advice].
- Have you seen the posters about how if you've had a cough for more than three weeks it means you've got lung cancer? [this one only comes once you've got far enough into the cough discussion to have established that it's not the sort which comes, is cured, and goes away. Anyway, suppose the cougher does have lung cancer? Are you actually prepared for that answer, before you jump in?]
- You ought to be in bed.
And finally, but most of all, please don't recite this jolly little rhyme, as several people have done to me. It's not that I lack a sense of humour, but - really? Tactless, or what?
- It's not the coughing that carries you off, it's the coffin they carry you off in.
People's kindness can be nearly as stressful as the hostility. I have lost count of the cough sweets pressed on me and the glasses of water thrust into my hand, "to soothe your throat". It would be in vain to explain that I haven't got a sore throat. Cough = sore throat, doesn't it? So I usually thank people nicely, but then I feel as if I'm under obligation to stop coughing, which can be difficult to do (without going into too much detail, a coughing fit means my airways need to be cleared, a process which is delayed but not improved by stopping to scoff cough sweets). People mean well, I know, but the end result is that I am hesitant to go anywhere.
The other thing I really can't do is talk much, or at all, from the start of a coughing fit until after the, er, "clearing of the airways". Trying to talk makes the effort worse and delays the process. I do understand that people are trying to check whether I am choking, but I am more likely to do so if I start talking at the operative moment, so better to wait with your questions until the moment passes.
Here is a gentle suggestion of what might constitute a list of Top Things Not To Say To A Complete Stranger With A Cough:
- That's a nasty cough you've got.
- Have you seen a doctor about that cough?
- You should take [X] for that cough [or any other unsolicited advice].
- Have you seen the posters about how if you've had a cough for more than three weeks it means you've got lung cancer? [this one only comes once you've got far enough into the cough discussion to have established that it's not the sort which comes, is cured, and goes away. Anyway, suppose the cougher does have lung cancer? Are you actually prepared for that answer, before you jump in?]
- You ought to be in bed.
And finally, but most of all, please don't recite this jolly little rhyme, as several people have done to me. It's not that I lack a sense of humour, but - really? Tactless, or what?
- It's not the coughing that carries you off, it's the coffin they carry you off in.
Saturday 25 January 2020
Food nostalgia (or, the strange things that cross your mind when you are old, ill, or both at once)
When you are ill, or old, or incapacitated in a way that leaves you with time on your hands and a need not to think too hard about the present, your thoughts begin to wander in unexpected directions. Memories suddenly appear unbidden: a surprising number of them are about food, perhaps because you no longer have much control over what you are being given to eat. I have had sudden cravings for things which I only occasionally ate before being ill; I have wanted to try both new things and things from the past which I haven't had for a long time (perhaps there's an element of a food bucket list in this!); I have longed for dishes I used to cook a lot but can no longer do, things which were not available in hospital and are not part of the repertoire of the rest of my family; I now look obsessively at food blogs and recipes and I still keep up my recipe notes in the hope that one day, perhaps, I will be able to do some of it again.
One memory which floated back was of my grandfather, who, becoming seriously ill with a degenerative disease in his 60s, badly wanted the tripe and onions of his childhood again. Bleurgh. (My grandmother couldn't locate any in the small southern English town they had moved to - he might have had a better chance in the various cities they had lived in). I have also read somewhere that, along with working more generally on memories with older people (particularly those with dementia), someone has had the idea of researching what food was popular in their childhood and giving them that.
You can't over-generalise, of course. Some people's memories, not just about food, are not good. Tread carefully! Asking an old lady about her deceased husband might produce a lovely romantic story, or it might draw out of her a tale of broken fingers and how he only saw the baby once and pushed off and was never seen again and left her destitute. As for food, if I am ever in a position where somebody thinks it would make my day to return to the cuisine of the 1960s and 1970s, I think I would like the chance to veto some of it!
One memory which floated back was of my grandfather, who, becoming seriously ill with a degenerative disease in his 60s, badly wanted the tripe and onions of his childhood again. Bleurgh. (My grandmother couldn't locate any in the small southern English town they had moved to - he might have had a better chance in the various cities they had lived in). I have also read somewhere that, along with working more generally on memories with older people (particularly those with dementia), someone has had the idea of researching what food was popular in their childhood and giving them that.
You can't over-generalise, of course. Some people's memories, not just about food, are not good. Tread carefully! Asking an old lady about her deceased husband might produce a lovely romantic story, or it might draw out of her a tale of broken fingers and how he only saw the baby once and pushed off and was never seen again and left her destitute. As for food, if I am ever in a position where somebody thinks it would make my day to return to the cuisine of the 1960s and 1970s, I think I would like the chance to veto some of it!
Saturday 18 January 2020
On having a chronic cough (1: On the buses)
It is said that many of us have the power to make someone look up or look in our direction by focusing intently on the one whose attention we want to attract. I am quite good at it though I don't claim to have extraordinary powers of telepathy. Perhaps there is a latent instinct in us all which kicks in (how do we explain it otherwise?).
I have had a persistent and unlovely cough for over 8 years. It is an anti-social thing, tiring and unpleasant for me and not very nice for anyone around me. It is the most obvious symptom of one of my chronic conditions. One day, travelling to work on a Cardiff bus, I became aware that someone somewhere on the bus was doing the telepathic stare thing in my direction. Once you become aware of it it startles you into looking up, and in this case it felt full of malice and ill-will. Sure enough, there was a youngish man glaring at me with hatred in his eyes and heart, clutching a scarf across his mouth.
I have got so used to the cough by now that I forget that in the world of normality someone coughing on public transport means one thing and one thing only: an irresponsible person with an infectious condition has deliberately set out to pass it on to everyone else and make them all ill too. Every now and then people on social media shout out (presumably in lieu of actually shouting on their train or bus, or doing the glare thing) that people with coughs should STAY AT HOME and STAY AWAY FROM WORK.
Here, just for a bit of balance, is a list of some of the reasons why people might be coughing but are not a danger to you:
allergies
asthma
bronchiectasis
COPD
cystic fibrosis
idiopathic pulmonary fibrosis
lung cancer
They might also have a legacy cough from a previous illness such as flu, pneumonia, or a collapsed lung. This list is of course not complete.
You are not going to catch any of these, worriers on social media and the hater on the bus. I understand the anxiety, of course, but the concern of others, especially when it centres however politely on suggesting I should be out of sight and hearing of the rest of society, is quite stressful, and one does wish to delay being housebound, unemployed and socially isolated for as long as possible. A chronic cough is for life.
I have had a persistent and unlovely cough for over 8 years. It is an anti-social thing, tiring and unpleasant for me and not very nice for anyone around me. It is the most obvious symptom of one of my chronic conditions. One day, travelling to work on a Cardiff bus, I became aware that someone somewhere on the bus was doing the telepathic stare thing in my direction. Once you become aware of it it startles you into looking up, and in this case it felt full of malice and ill-will. Sure enough, there was a youngish man glaring at me with hatred in his eyes and heart, clutching a scarf across his mouth.
I have got so used to the cough by now that I forget that in the world of normality someone coughing on public transport means one thing and one thing only: an irresponsible person with an infectious condition has deliberately set out to pass it on to everyone else and make them all ill too. Every now and then people on social media shout out (presumably in lieu of actually shouting on their train or bus, or doing the glare thing) that people with coughs should STAY AT HOME and STAY AWAY FROM WORK.
Here, just for a bit of balance, is a list of some of the reasons why people might be coughing but are not a danger to you:
allergies
asthma
bronchiectasis
COPD
cystic fibrosis
idiopathic pulmonary fibrosis
lung cancer
They might also have a legacy cough from a previous illness such as flu, pneumonia, or a collapsed lung. This list is of course not complete.
You are not going to catch any of these, worriers on social media and the hater on the bus. I understand the anxiety, of course, but the concern of others, especially when it centres however politely on suggesting I should be out of sight and hearing of the rest of society, is quite stressful, and one does wish to delay being housebound, unemployed and socially isolated for as long as possible. A chronic cough is for life.
Saturday 11 January 2020
Get well soon!
I have in the past been as guilty as anyone else of sending people cards with this message without knowing whether it is appropriate or not. Obviously when someone first becomes ill they and their friends and family all hope that this is a temporary state of affairs. You go the doctor, or the hospital, you are treated, the nasty thing goes away and you are back where you were.
Chronic illness doesn't work like that, unfortunately. You are not going back to normal, although you might be one of the lucky ones whose disease has been found early enough for a bit of improvement, or at least for you not to get any worse in the near future, and for it to be managed successfully. That wouldn't have quite the same snappy impact as a greetings card offering, of course - "Don't get any worse" wouldn't get a lot of custom, I suspect.
As time goes on it may be more apparent that it is not the right message. A chronic illness is very often progressive, even with periods of remission and allowing that some of these conditions can keep you in their grip for a long time (years in some cases). After a while, the expectations of friends and family can be a bit oppressive, and the message, however well meant, can imply that it is up to you not to be ill - go on, get well! Behind this lies bafflement at coming to terms with the idea that this might not happen ("nonsense, they wouldn't let you out of hospital if you weren't getting better") and perhaps some confusion over the difference between having an incurable disease and having a terminal diagnosis (not necessarily the same thing - although this might seem a rather moot point).
There is also a bit of finger-pointing at the sick and the disabled in society at large which basically seems to suggest that our fate is entirely in our hands. Gaining weight? You are eating too much fat and sugar and not exercising enough. Losing weight? You are not eating properly/enough. There can be serious medical causes for both weight loss and gain which have nothing to do with diet and exercise, and this constant background noise of blame is unhelpful and can distract from addressing the actual causes, which may not be in our own hands at all. This is, of course, a scary thought for everyone.
Chronic illness doesn't work like that, unfortunately. You are not going back to normal, although you might be one of the lucky ones whose disease has been found early enough for a bit of improvement, or at least for you not to get any worse in the near future, and for it to be managed successfully. That wouldn't have quite the same snappy impact as a greetings card offering, of course - "Don't get any worse" wouldn't get a lot of custom, I suspect.
As time goes on it may be more apparent that it is not the right message. A chronic illness is very often progressive, even with periods of remission and allowing that some of these conditions can keep you in their grip for a long time (years in some cases). After a while, the expectations of friends and family can be a bit oppressive, and the message, however well meant, can imply that it is up to you not to be ill - go on, get well! Behind this lies bafflement at coming to terms with the idea that this might not happen ("nonsense, they wouldn't let you out of hospital if you weren't getting better") and perhaps some confusion over the difference between having an incurable disease and having a terminal diagnosis (not necessarily the same thing - although this might seem a rather moot point).
There is also a bit of finger-pointing at the sick and the disabled in society at large which basically seems to suggest that our fate is entirely in our hands. Gaining weight? You are eating too much fat and sugar and not exercising enough. Losing weight? You are not eating properly/enough. There can be serious medical causes for both weight loss and gain which have nothing to do with diet and exercise, and this constant background noise of blame is unhelpful and can distract from addressing the actual causes, which may not be in our own hands at all. This is, of course, a scary thought for everyone.
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