Sensitive comments

[libby]

at the end of class the other day, one of the students came up to me, looked at me closely and said, "you're very, very pale!" so i explained i was in horrendous pain that day, and she just kept looking at me and said, "you are wonderful." to which i responded with enormous surprise and she explained, "you're suffering so much, and you are so self-contained. others can't tell how hard it is for you. you struggle to keep on with life despite it" sure enough, that's the biggest problem of HMS in a nutshell, but i was stunned at her compassion and empathy. so people really can be very understanding and loving - it's up to them, i guess.. ahem! well then...

libby

[Blaadyblah]

I'd one like that this morning when I went to get milk at the cafe in my office building. The guy behind the counter asked me what I'd done to my hand and I laughed, explaining that in trying not to further damage the wrist I'd managed to pop a finger adjusting my position on a seat.

The guy stood next to me at the counter said I was incredible and asked, doesn't that hurt? I answered that of course it hurt, but I'm used to it, it's a connective tissue disorder thing, *shrug*. He said he thought I was amazing. D

Maybe it's something in the air?! Certainly makes a pleasant change from the suspicious/pitying or uncomfortable shuffling I usually get!

[libby]

hi all,

i was feeling a bit depressed by the staggering number of replies to the "insensitive comments" thread, and thought i'd start a new one, this time about sensitive comments. i can't say i've heard many sensitive ones, but... i might need to get my ears checked. it's a possibility! don't look at me like that!

okay, so here are my two favourite sensitive comments:

1. i was talking to a fellow student outside class a few years ago - she asked me about my pain and i said i had constany pain; she looked empathic, then confused and uncomfortable, and then turned to me and said very honestly, "I really have no any idea what to say." she was real, she let me see her emotions, and she didn't run away. i don't think she'll ever know how healing those few seconds were for me.

2. a friend walked up to me at the end of one class, in school, and asked me why my face was so horribly pale that day. i said i had very strong pain and that it probably showed on my face. she was horrified, jumped and looked at me and said, "You mean right now? And you've just been sitting here all this time, silently? You are so brave!" she gave me back all of my self-respect in one moment.

i hope you're pain-free and well.

libby

[Blaadyblah]

I've had similar, but the two that stick in my mind are below:

The first was a friend of my boyfriend. He asked what the problem was with my legs (I was using sticks at the time) and I answered that they were 'loosely strung' and so they got hurt easily and that I'd also sprained my knee. His first question was whether the condition would get better, to which I answered no. His second question was "does it hurt?", to which I answered yes. He then asked if there was anything he could do (we were stood in a busy club) and when I said "not really!" he simply said "I'm sorry, want a pint then?" Fabulous, no messing.

The second conversation was almost identical. I was eating a pub lunch with my friend and her family and my wrists were strapped. Her son was sat to my right (he was an seven year old autist), looked at my hand and asked if it was broken. I explained that it wasn't broken, but that it was damaged. He asked if it could be fixed and I told him no. He asked if it hurt and I told him yes. He went back to his meal with his right hand, but lifted his left and gently stroked my right wrist occasionally throughout the meal. That was particularly touching, he's the sweetest little boy.

[Tiz]

Blaadyblah, what an adorable little boy! Children can be wonderful in their complete honesty sometimes, they never worry about if they're saying the right thing or not, so we know to to get upset if they accidently say something insensitive, and it means they can be so overwhelmingly sweet because it doesn't occur to them to be self conscious about it. I bet that put a smile of your face for ages afterwards.

I think this is a great idea for a thread, we need to counteract all the insensitive comments and remind ourselves that some people really do care. I'll probably be back to add more when I remember them, but for the moment I'll just start with this one.

When I got diagnosed two weeks ago, rather than face having to tell everyone individually I changed my facebook status to "Tiz has hypermobility syndrome, which explains a lot!", and then waited for people to ask about it. That was on the Friday, when I got into Uni the following Monday one of my friends asked me about it and asked how I'd finally managed to find out, when I said that I'd been to see a doctor called Rodney Grahame he said that he recognised the name from an article somewhere and proceded to find said article on the internet, turns out that on reading my status he'd immediately started researching about HMS, more a gesture than a comment, but I thought it was really sweet and told him so.

[Jenny]

I've just been away with two of my friends on a conference for uni, they were brilliant! We all have our own little 'problems' but we got a taxi back one night so I didn't have to walk and one of my friends (who is pregnant) when we got back waited on me hand and foot so I could just sit back and chill!Simple things...

[Sez]

This was more something that made me smile
When driving my friend and boyfriend from Colchester Uni to my friend's house, my knee had a crunchy moment. There was nothing I could do but grin and bear it until we were back at the house, and they helped me out of the car and into the living room, packed my knee up with pillows and then proceded to argue over the best course of action (my friend works in a hospital, my boyfriend is a first aider). In the course of the argument, my friend aimed a kick at D and accidentally hit me instead... my knee made an almighty clunk and the pain suddenly reduced, and she went to bring me back some "ice for my knee". The ice turned out to be a tub ice-cream and a spoon! The best part was that I didn't have to explain what had happened, or what I had "done to myself" - it was the first time for me that having HEDS has ever simply been accepted as a matter of course without the frustration of trying to make people understand.

[cally6008]

Fabulous Sez

[Eloise]

It is really nice to know there are some sensitive people out there.

My hips have been agony today - but I did finally get into work at 11:15am. Most in the department know about my condition but there is a new admin girl and so she was asking me about it. So I explained how all my joints are loose and damage easily and showed her all the hand positions etc. She tried to do them and admitted she couldn't. She then said "great party tricks - bummer it comes with the pain" - I think she summed things up perfectly. We then just moved on to other subjects as though I was still the exact same person

[sanguine_emma]

Not particularly "sensitive", but amusing. I was talking to someone at tots group on weds, and her 4 year old boy was with her. When I mentioned I had SPD, the little boy pricked up his ears and said "can I see your SPD?" this confused me until it was explained to me that SPD was a power rangers reference. For the next hour, the little lad tried concertedly to engage me in conversation about power rangers, I couldn't make him understand that I didn't know the first thing about them!

[janey]

I'm sure in a few years time Stephen will make you a Power Rangers expert!

[loosebones]

I'm so reassured that my doctor is human!
He listened to the list of problems I presented him with, then said "That's a bit of a b*gg*r isn't it", he then proceeded to rant about the "bl**dy NHS" and how bl**dy bad this must be for me! I feel quite satisfied he is on my side now!

[Retro]

Ha ha, brilliant LB!

The nearest my ex ever get's to "sensitive" is "lie down, you don't look well"

Lindsey

[Eloise]

Well with my bad hip and feeling pants I did go to work today (mainly so I could chat about the earthquake and have company), and I went to the "Manual Handling" training which is mandatory every year.

The bloke doing the training was on about the "doing things with in an individuals limitations" and explained hopw he has hip and knee injuries from sports so can't bend "properly", and how you can adapt things as needed.

He then asked if anyone in the room had any injuries, there was only four and I was the youngest. So I said - "yes - Joint hypermobility Syndrome". And he just looked back and said - "well that beats mine"!!!!

He asked me what I struggled with, and when we came to the practical session for picking things up I said - well I don't do it properly but I connect my core-muscles and he said my technique was fine for me (and probably safer than other peoples as I know where my core-muscles are). Also, when he was showing us the spine and hip model he pointed to the SI joint and said - do you have problems with that? - I said no - but I know of lots that do (Well I have seen your posts) So I really think he must know someone with it, but I had no time afterwards to chat to him.

I just thought he was really really considerate and sensible which I really wasn't expecting for a PCT training session

[hannah]

That really is great eloise

My work colleagues are the best.
Today most people who sit near me were out of the office except 2 guys (P and S). I was return to my desk from the printer and completely lost the ability to walk in a straight line - two inches forward, 3 inches left, one backwards and foot on its side! After 2 attempts, P walks past 'OK there Han' (his code for 'I want to ask if you need help, but don't want to make a fuss over you') I say 'fine' he carries on whatever he's doing. 2 more attempts and end up 4 inches futher, legs crossed and facing at 90 degrees to where I should have been S looks at me with what I call his 'question' look (the one he gives me when he wants to check I'm OK, but not ask outright and make an issue of whatever wierd thing I've just done), and unfortunately my speech was not cooperating either so I beckoned him (I could understandably have been interpreted as being very rude) he comes round his desk and offers me his arm, and escorts me in a most gentlemanly fashion back to my desk. (all of 2 metres away)
I said 'sorry about that' to S, just as P returns. S says 'any time' and carries on as if he'd just opened the door for me or something completely ordinary like that. P says 'You are never any trouble Han, if there is anything we can do, just ask. You put far more into this team than you take out'
What a lovely thing to say, especially for a disillusioned chap with a dry, mick taking sense of humour

Having POTS has meant I have seen a side to many of my colleagues which I think even people who know them pretty well would never know existed.