Someone asked if you describe yourself as a sufferer or patient. My question is who to?
Nobody, apart from people in hospital waiting rooms are comfortable with discussing diseases. For the first time in four years a taxi driver said What's wrong with you then? It was a trip back from the hospital and i had my oxygen on. I rattled off my impressive list of diseases. He said Oh that's a lot, asked a couple of questions and said it was really interesting. The only one in four years
My reason for asking was I was looking at a marketing proposal which talked about Patients and then swapped to Sufferers.
I had such a strong reaction to the word sufferer that I wondered how other people would describe themselves.
I must admit not many people ask me! I think I quite like it - I have told very few people as I need to be seen as me not my disease.
Having said that each day when I get to work, my receptionists give me a big smiley “hello”, they ask me how my walk was and it helps me every day.
Hi inamoment I wouldn’t never never ask anyone what illness they had not even the hospital waiting room. If someone wants you to know or needs help they will let you know it is so rude to ask such a personal question its worse than asking a woman of a certain age how old are you then. Take carexxx
Unless they are sitting there thinking the same as you
I'm giggling - I'm a woman of a certain age and love telling anyone impolite enough to ask my age (63). I think I'm a surprisingly well preserved 'for my age' specimen but I do admit I love hearing 'What? No way, you can't be older than 50 at most!' - which is of course a well-meant bald-faced lie as I know despite having only a few silver strands and few wrinkles, I do look every one of my 63 years.
I must have one of those 'it's ok to ask' faces - I wear a BHF broken heart badge and am often asked about it (most common question is 'Is that a love token, where did you get it?'). I'm also asked about my MedicAlert bracelet - which was the smallest one on the offer page but is big enough to be quite noticeable. All ages ask about the badge and the bracelet - and I try not to bore them with long drawn-out answers
In my experience, quite a lot. Most of my neighbours ( mind they were woke up at 1.30 in the morning by 2 paramedics and an ambulance with all lights blazing) so they quickly found out what had happened.
I have realised that some people don't discuss things when they have a heart episode. When I was working I used to organise a Christmas meal in work for me and my colleagues (working and retired) Once retired colleague when I sent an email asking him if he was coming on the meal started refusing saying he had a stomach problem and was struggling with his diet.
When I had my heart attack, someone obviously contacted him to tell him what had happened, and a few days after I came out of hospital I got a txt from him where he recommended cardio rehab saying that he found it very helpful, so I can only assume that the stomach problem was actually a heart attack! I found it a bit strange that he didn't want anyone to know he had heart problems.
My husband won't tell anyone about his heart condition, I think it's because he doesn't like a fuss made.
I think I know just how he feels. My thing is I don't want to be seen as an invalid and I have had people who know about my heart actually refer to me as an invalid either to my face or when they think I can't hear them.
I'm ambulatory (mostly ), don't have (or need, yet) a blue badge, can carry my own tea tray, and do all my own housework - I am not an invalid.
I think that's what Kevin feels, he hates the thought of being thought of as an invalid. He won't apply for a blue badge! When he was first poorly and literally couldn't walk to the bottom of the garden path he did have a blue badge. We parked in a disabled spot and someone aggressively challenged him as to why he was parking there, the challanger had a walking stick so his disablilty was visual!
I have a friend down in Devon with a blue badge and she was challenged at least once a day until her condition progressed to the point she needs a stick - no more challenges.
I sometimes see someone using the disabled bays who 'looks able-bodied' - before I say anything I look for the blue badge. If I see it I keep my beak in, if I don't see it I stick my beak right in but in a friendly way - 'I think you've forgot to put your blue badge up...'. Sometimes they admit they're not the badge holder, sometimes they go back to the car and display the badge.
My neighbour up here in Scotland tells me Scottish blue badges are now including a photo, I wonder how that works.
Doesn't the badge holder need to be in the car to be able to use a disabled spot? I assume if someone doesn't look like the photo you can tell them to where to go...literally.
I think it is the rule the badge holder must be passenger or driver if the bay is used and the badge displayed.
My impression of the photo on the display badge is to identify either. I'm not sure how I feel about the photo, actually. My local area is prone to 'err on the side of caution' and not say anything (whilst giving the hard glare, lol - we Scots are rather good at the hard glare) but down in Glasgow using the badge and bay if not the holder earns the offender loud shouty scorn.
My husband and I discussed it when my conditions went more serious - would we or not request the badge. We decided against it as he's the driver (still don't have driving clearance from an injury three years ago) and he can drop/pick-up.
My mum, granny & grandad were glaswegian, that loud shouty scorn is all it would need 😂.
I love visiting Glasgow - and go out of my way to avoid the loud shouties!
Mine has a photo, in Sussex, but it's inside the folder so not on display
Once, in a hospital blue badge park, i was told that i didn't have right sort of car for a disabled person, mx5, and that I'd stolen the card. I was putting my oxygen cylinder canulla on at the time.
I think (not sure, I'll ask the neighbour next time I see him) the photo on the Scottish badges have to be on the display page, the details are inside but the photo shows to the public.
What is wrong with the sort of people who suggest the badge is being fraudulently used whilst watching the holder struggling with a tank and cannula?! I'm so sorry to hear you've had that happen to you!
My husband often avoids large groups of people who know him as he gets tired of being asked how he is! He will happily engage in conversation with a stranger and tell them what happened!
I mostly move in a caring church context (it was my job), and people ask quite often- casual, but genuinely well meaning and supportive.
HOWEVER, they always assume that I am making steady progress and that I will back at work, pulling my weight etc (they’ve worked out it might be slow after 10 months) and the truth is.. it isn’t like that! I’m not going to be back where I was, and actually things are still slowly declining ( I know this isn’t the usual picture....).
I haven’t the heart (😂) to be honest with them, so I just smile along- but actually it doesn’t help, it hurts. I know they mean well, and I feel bad at complaining.
There are a few friends who known the truth, and they are fantastic, but know not to ask any more than how I am today.
Sharing this here because sometimes I need to say it, and I suspect others will feel the same.
I get what you're saying Hector's Dad, although it's my husband who's poorly. I'm fed up with trying to explain yes he looks OK, but that's not always the case and just because he looks OK at the moment doesn't mean he is!
I hate.....you look so well you'd never guess you were in pain or have a heart condition!
Hi Inamoment, very few people ask about my condition - I just tell them! Like when a delivery man tried to hand me a heavy box, I said I was recovering from open heart surgery and asked him to carry it into the house. I feel invigorated and excited that I've got a new lease of life after being ill and misdiagnosed for years and that I survived an eventually near-fatal disease and open heart surgery, and will happily tell anyone about what happened. I'm also intending to blog about it to help me recover mentally and perhaps help to spread awareness. I'm still not quite well enough to work, and was 'on the sick' for 4 years before things came to a head, although I did some voluntary work online from home. So, when meeting new people who ask what I 'do', I'm happy to explain why I don't work at the moment. While I was misdiagnosed with mental illness, I told people about that, too, and got heavily involved in the 'Spread the word about mental health - Break the stigma' movement.
I did something of the same - the postie and regular couriers know I have a heart condition that makes lifting or getting to the door quickly difficult. It's nice in that occasionally the postie now rings and waits with something he could have put through the door - he says he likes to be sure I'm still able to get to the door at all. I do a lot of my shopping online (I live in a small town with limited retail stock) and the couriers all know to give me a bit of extra time to get to the door - if my husband answers the first thing postie and couriers want to know is if I'm well.
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