Visible complications and Invisible diabetes

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Flower

Flower

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Relationship to Diabetes
Type 1
I'm glad diabetes is mainly invisible. No one knows I have Type 1 and a pump hidden under my jumper unless I choose to tell them. I like that it's not obvious.

My Charcot foot complications on the other hand 🙄 are very obvious, I have a big white plaster cast on my leg and pink crutches. I've been in a cast on one or both legs for about 25 years - my bones keep collapsing and I've been told the only thing available to me is a below knee amputation, I've said no to that for now so I'll keep hobbling on for as long as possible.

I've written before about the level of comments I get every time I go out, stupid throw away comments- "enjoy your trip" "you must have been really plastered" I'm called Hop-a-long, Long John Silver & numerous other things and they really hack me off. I wouldn't shout something at someone about their disability, what makes someone feel able to do that?

Someone came to mend a door where I live today and as I let them in he said "so what have you been up to then?" No niceties just straight in. There's an assumption that it must have been a real comedy banana skin event that I want to talk about with strangers and not something I really don't wish to discuss - neuropathic damage causing my bones and joints to collapse for the last 25 years ending up being told to have an amputation.

I try to deal with it as best I can but making comments about something so physically and mentally painful are so unacceptable and inappropriate. Here ends another rant. 🙂
 
It’s tough for you. I’m sure most people just don't think that a plaster cast could mean a long term disability, assume a recent mishap, and can’t resist commenting. And everyone that makes a comment assumes they must be the first to make it, not that it’s one you’ll have heard a million times before.
 
I think the thing is that most people with casts have simply broken their leg/arm, and the cast is only temporary, so other folk think it's 'safe' to comment - because they assume that anytime soon the cast will come off and you won't be needing it any more.

I suspect the general public have no idea that casts can be permanent (to be honest, until I read your post I didn't either)

I suppose, too, that it feel a bit 'off' NOT to mention something that is so obvious as a cast??

Sometimes it's hard to know just what is tactful, and what is not?

I had occasion at one point to welcome into my home someone I'd not met before, and she was using a crutch. What I said to her was 'Oh gosh, is that temporary or permanent?' (It was permanent, she had bad arthritis). Was that rude, or OK, or what? It can be hard to know whether to mention it or not, when it is so 'obvious'??

That said, I guess if one saw someone in a wheelchair one is more likely to assume it's permanent, even though it's possible for it to be temporary only.

I can understand how it gets both wearing, and annoying, and indeed hurtful to you.

I'm glad you've been able to avoid anything as drastic as amputation, and I hope the cast and crutches can keep you sufficiently mobile. That seems a much better option than the alternative.
 
Thank you! 🙂 It is hard to see it from the other side and most people in casts are doing a short 6 weeks in a temporary cast and will mend perfectly well. I forget that bit! I know I shouldn't let it get to me. Charcot foot is thankfully a rare complication, I've never met anyone else hobbling around for 25 years with it.

Ok, back to being a perfectly reasonable person again! 😉
 
So many folk seem either embarrassed, or helpless, or unsure about how to behave around someone who is 'different' in any way. They can 'mean well' but still do or say the wrong thing.

I have neighbours one of whom is in a wheelchair (permanently alas), and I know when I encounter them in the road I always try and ensure I am addressing 'both levels' so to speak, and not just (literally!) speaking over the head of the one in the wheelchair.

Don't know whether you remember it, but there used to be a programme on Radio 4 for those with disabilities of any kind called 'Does he take sugar?' which 'mocked' (somewhat bitterly, and understandably) how so many people 'don't talk' to anyone 'different' in any way.....

Slightly sideways, a friend of mine was telling me recently that a friend of hers has been diagnosed with cancer, and she has to stop herself saying, when she sees her, the general greeting of 'Hi, how are you?' which we just say 'automatically' so often (or 'Hi, how are things with you?' or whatever.) She's trying to train herself to say simply 'Hi, good to see you'....
 
Flower said:
Thank you! 🙂 It is hard to see it from the other side and most people in casts are doing a short 6 weeks in a temporary cast and will mend perfectly well. I forget that bit! I know I shouldn't let it get to me. Charcot foot is thankfully a rare complication, I've never met anyone else hobbling around for 25 years with it.

Ok, back to being a perfectly reasonable person again! 😉
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It doesn’t make it any less annoying, though. When I was younger, I used to think I'd be really rich if I had £1 for every time I was introduced to somebody by my first name, and they said 'Oh, were your parents hoping for a boy?' And every one of them assumed they were making a witty and original comment.
 
I'd say Robin is pretty androgynous overall - but I can see it isn't for everyone! Maybe it's like Francis/Frances and Lesley/Leslie, more in the spelling - if you see 'Robyn' then one is more likely to think female??


These days, there's a huge fashion for completely non-specific names, like Taylor, and Brandon, and so on, and it's impossible to know - maybe that's the point?!!!
 
Callista said:
I'd say Robin is pretty androgynous overall - but I can see it isn't for everyone! Maybe it's like Francis/Frances and Lesley/Leslie, more in the spelling - if you see 'Robyn' then one is more likely to think female??


These days, there's a huge fashion for completely non-specific names, like Taylor, and Brandon, and so on, and it's impossible to know - maybe that's the point?!!!
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Nobody bats an eyelid these days, but when I was a child, it was far less common as a girl's name, and not even the American spelling of Robyn had crossed the pond. (I was named after an aunt, but it was her nickname, not her given name.)
Shockingly, I once turned up for a job interview when I was a new graduate, and the interviewer's face fell as I walked in, and he said 'I thought you were going to be a man, I wouldn’t have interviewed you if I'd known you were a woman.…of course I’d deny I ever said that…'
 
Robin said:
It doesn’t make it any less annoying, though. When I was younger, I used to think I'd be really rich if I had £1 for every time I was introduced to somebody by my first name, and they said 'Oh, were your parents hoping for a boy?' And every one of them assumed they were making a witty and original comment.
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No it doesn’t make it any less annoying. It does puzzle me what makes someone say something even if they think it’s funny and original. It must be a pretty instant decision to comment - see someone with a cast - call them Long John Silver. I really don’t understand the thought process!
 
Flower said:
No it doesn’t make it any less annoying. It does puzzle me what makes someone say something even if they think it’s funny and original. It must be a pretty instant decision to comment - see someone with a cast - call them Long John Silver. I really don’t understand the thought process!
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Yes, but we are intelligent.
 
My daughter has been in a wheelchair for the past 6 months (hopefully temporary), and she’s had the full range of comments! Some people go out of their way to be helpful, a lot do not though. Some things she’s encountered:

- she gets called Ironside a lot
- younger kids at school shouting “vroom vroom” every time she rolls past
- some kids at school find it fun to block her in the lift or keep pushing the call button so that it won’t go up. Thankfully we’ve discovered that they have CCTV in that corridor so we’ve reported one lot of little darlings and will keep doing so if it keeps happening
- people sniggering when she was out shopping with friends and they were looking at shoes, as if to say “why do you need shoes?” - actually people can be in wheelchairs for many reasons, a lot of these people can actually stand or walk a few steps, they just can’t maintain it for long, how do they suppose she gets out of her wheelchair to use a public toilet without putting her feet on the floor?
- one very rude lady while she was out with friends very obviously looked from her to her friends and back again and then asked the friend “what’s wrong with her?” The friends completely ignored her and carried on with their conversation. The woman eventually left but not without shouting at them “you should get her a blanket, she’ll be cold!” My daughter is nearly 17 and quite capable of deciding for herself how many layers of clothes/coverings she needs, and of course can speak for herself but that woman didn’t deserve an answer!
- one lady who held a lift door open for us to get in, you could almost see the cogs turning in her brain wondering why someone so young with no leg splints or any other sign of injury could be in a wheelchair, she was obviously brought up with manners though and had the decency to keep her thoughts to herself!
- we get a lot of chuggers in our town and have had some that do make the effort to direct their questions to her as well but others don’t and only talk to me, “who’s this then?” That was when we’d only had the chair a few days and I so wish I’d had the nerve to say to him “why don’t you ask her yourself, just because her legs don’t work it doesn’t mean her brain doesn’t!” I’m too chicken though :(

You can forgive very young children asking questions, had one in a hospital waiting room loudly asking his mum “what’s wrong with her?” and the mum very sensibly replied “I don’t know, everyone is different aren’t they”. Teenagers/secondary school kids ought to know a bit better. And adults definitely should, but I have to say that we had no clue about the issues that people in wheelchairs have to face with accessibility and so on until we had to start doing it too, so I guess that applies to a lot of other people also. Doesn’t mean you have to make silly comments though!
 
Really sorry to hear that your situation is getting to you @Flower but totally understandable. (((HUGS)))

Other comments are right though. It is easy to take offence where none is intended and it may be because you are conscious of your vulnerability and therefore it is easy to put a negative connotation on what others say which may not have been intended.

It brings to mind a comment I made to a guy in a wheelchair who had 3/4 terrier dogs on leads as he headed through the town centre. He wasn't a total stranger, as he had been in my year at school although he was mobile then with the help of calipers. This encounter was many years later and I hadn't seen him since school and I don't know if he recognized me, but he was coming along the pavement towards me. I wanted to acknowledge him rather than just side step him and walk past and at the time I was just getting into driving my horses and in fact the encounter was just along the street from the saddler I had been visiting to get work done on my harness. So with that in mind and looking at his situation I said "you should get those dogs harnessed so that they can pull you along". To me with my interest in using an animal to pull a vehicle which was carrying me, that seemed like a reasonably appropriate comment but I am guessing from his reaction that he felt patronized or that I was making some comment about him being in a wheelchair and therefore less able to propel himself. When in reality I was just trying to be sociable and make a connection between two animal lovers. I can't remember his response but this happened 20 years ago and I still remember it with significant clarity and feel bad about it because I know I got it wrong and he was upset by it..... but that wasn't my intention. I very much doubt that he remembers and I haven't seen him since but I imagine it was just another of those many incidents like you describe @Flower that get you down. In reality, just an innocent comment from someone trying to be inclusive and make a connection rather than ignore you.
I am still not sure how I could have handled my situation with this guy better, especially on the spur of the moment as many such comments are. Should I have just walked past and said hello and no more? If it had been a mother with a child in a buggy and a handful of dogs, I might have said the same thing if I half knew her. I am not sure I would say it to a complete stranger but maybe I would. My town is rural and we still speak to strangers here and exchange pleasantries which I think is what community is all about..

Anyway, really sorry to read that you find these situations so dispiriting. I accept that there are some people who are just downright ignorant and rude and I sit here wondering... maybe I am one of them, because I may well have been guilty of making some similar comments to those you describe above, in the past. But then I think about how my comment to my ex schoolmate has haunted me for 20 years and if I was ignorant or rude, I wouldn't have given it another thought.

I am actually at the stage that I am becoming so frightened of saying the wrong thing to people in general, not just people with obvious disabilities, different skin colour, gender orientation or even just different political views, that I avoid situations like group gatherings and parties where I might do so. I like forums because I can reread and edit before I hit the post button, to minimize the risk of causing offence..... but even then it can still happen despite, my best efforts.

I think with any situation, we should try to put ourselves in the other person's shoes and think about how we might have handled it, before we judge them and their motives. On the spur of the moment, could we have done better. I still don't know and I can't go back and change it.
 
Frustrating isn't it.
I think it is something about how to "deal with" people who are different.

I have red hair and always had comments about it. When I was younger I hated it because of the name calling: Duracell, Carrot-Top (I don't think I helped myself when I pointed out carrot tops are green) and the like.
When I was at school glasses were not very common and I remember friends being called names when they wore them. I think glasses are more common now so hope the name calling is less but I still inwardly felt a bit of the stigma when I had to start wearing them about 10 years ago.

I am not saying any of this justifies the reactions we get for being different whether it is a wheel chair or foot in a cast or having different coloured hair. It would be nice to be one of those non-descript people of average height, average build, dark hair and probably male (maybe I say that as a female engineer) with no visible health issues that no one notices.
 
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I tease my daughter about getting some sled dogs to pull her wheelchair along, she thinks it’s funny but then I’m not some random stranger, I’ve been through it all with her. She desperately wants a dog but as far as I’m concerned she’s not having one while she lives with us! She wants a hypo detection dog, but she’s got Dexcom for that and her hypo awareness isn’t completely useless!

She also has tics, which these days are a bit less obvious but when they first started up you couldn’t blame people for staring a bit when she was out and about. I took her to Leicester space centre once, she could still walk then but the tics were very obvious, for some reason that day they kept shouting “I’m a lumberjack” among other things. I was completely oblivious to other people’s reactions at that time, she was not though and told me afterwards that one woman literally shepherded her children away from us! Another woman looked like she couldn’t work out what on earth was going on, after witnessing my daughter shouting all sorts of rubbish and twitching a lot, she then heard her having quite an intelligent discussion with me about whatever we were looking at (stars or planets) :rofl:
 
Thanks everyone for your posts, it's really good to read them 🙂

I think my lack of tolerance is due to the amount of time I've been in this situation, the fact my foot and leg won't get better & the amount of times I've had comments made. I'm low on good will. I was thinking why do I let all the comments get to me. Even kind comments hoping my leg mends soon or saying how painful it looks cause me issue. Obviously anyone wishing me well or commenting generally has no idea I've been like this for 25 years and have been told to have an amputation. I need to reset my good will button where it's appropriate.
 
Huge (((hugs))) to you @Flower - and thanks for sharing how difficult you find these comments.

I’ve had experiences where someone offering a little quip has brought a smile to my face, made me feel connected to other humans, and lightened a situation - bit it is also true that unwanted (and frankly unnecessary) comments can also be really difficult for
people, may be completely inappropriate, or simply unintentionally very unkind.

Hope it’s a long while before you have to endure another unhilarious and unoriginal comment :(
 
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