Insensitive comments

[trekster]

BB I would just shove one of Hannahs communication cards in their face. i.e. "sometimes I need crutches or a walking stick or a wheelchair"

I got questioned when I attended a social function a few weeks ago without my wheelchair. Then it was
pointed out to me that I was in my wheelchair the next time. I have tried to explain to this guy that
for longer distances i.e. social groups I need my wheelchair. I hope he gets the message soon.

Mums common comment (not going to hear for 2 weeks as shes away) is
"i dont like to see you in a wheelchair lexxie". I have explained to her that the orthopaedic surgeon when I was
7 thought I wouldn't be able to walk by the end of school as my feet were so bad. I think of it as well ive managed
20+ years before I needed a wheelchair so that's an achievement.

Another thing some of my family tend to do is accuse me of "getting that from books" and "I have that problem
of nearly falling over there's nothing wrong with it". Mums a bendy in denial I am so fed up with her behaviour
that im trying to persuade her to attend the next bendy meet.

Good luck to all those fighting injustice we can win!

[Rosie]

Hi all

If someone questions my wheelchair use, I just use the 'Did you know that over 90% of wheelchair users can walk?' statistic. If they still don't get it, I ask how they would feel if an elderly relative, using a supermarket wheelchair to make their shopping easier, received comments like that'.
Another good one is to point out that people who drive are able to walk, why don't they always walk instead of driving? The bemused answer is usually 'because it's too far' or 'it would take too long' and I point out that it is the same for me, only the distance I can comfortably walk is less than they can so I use the wheelchair.

Rosie

[Fluffym]

Nice one Rosie

[Blaadyblah]

I would have (was in fact thinking that, myself), but the conversation was at an adjacent table - I would have had to butt in so decided to just wait and see how far they'd go. I think they were most of the way to a standard Daily Mail 'filthy scrounging scum' article to be honest...

[alice-emma-louise]

Wow, I'm sorry Blaadyblah, that's awful! Thing is, if you'd have said something they'd have dismissed it as "well we know you're not faking it, but some people...." because people are quick to judge strangers and not quick to think of the alternative. Not to mention it's positively encouraged at every stage to "spot the frauds".

I've spent most of this week feeling crappy because the guy I share a house with called me and the OH "lazy f*** b*****d" the other day because we hadn't done the dishes (not realising I was still sitting in the living room - I do the dishes because my partner cooks and I like to retain some responsibility - the guy we live with knows this). We had a massive row and I explained (yet again after many, many arguments) how I *save* doing things that require standing for too long, or being up from the sofa and do them all at once so I don't have to go through the pain of getting up and sitting back down more than is absolutely necessary. Met with the reply "but it only takes 5 minutes, I just think it's lazy" despite me saying time and time again that I'm in pain ALL THE TIME (as an aside, why does that statement not shock people like it should? Pain, constantly, that's shocking!) and that what takes him no effort at all is ten times harder for me. Standing still just for 5 minutes is painful, let alone lifting heavy plates into and out of the sink so yes laziness is exactly it

Thing is, after the row, he apologised and gave me a hug and normally I'd forgive it, but I just can't get over it this time. I'm sick of him constantly saying hurtful things without thinking and thinking he doesn't need to change his behaviour (despite the reems and reems of information I've given him, all the emotional and difficult conversations I've had with him where I've opened up and been vulnerable in the hope he'll get the b****y picture) because he apologises afterwards and it's all over. It's not all over, every accusation of laziness takes years to get over, every knock in confidence takes months to bounce back from. Not to mention the fact that if someone I've lived with for three years doesn't get it, how will anyone else understand and not judge me when I'm in pain?!

I just can't forgive him this time and it's making being in the same room as him unbearable at the minute. Luckily we're moving soon.

Ax

[Blaadyblah]

You're right, I'd have been met with 'well, not you - obviously' and I just didn't have it in me to point out that I have done things like that, with consequences that aren't any of their business anyhow. If they'd any idea how horrible it sounded they'd think me oversensitive, I suspect.

He sounds like a right charmer. I'm glad to hear you'll be moving soon. With the constant pain thing, I find people just disbelieve it. They can't see it, they've seen me move about, or laugh so it can't be true. Even those who do understand rarely get how exhausting it is - or forget as they tend to see me in active mode rather than zombie like and slurring with exhaustion/POTS - the latter tends to see me bailing on social stuff.

[BendyBoff]

Alice - I understand where you're coming from. My husband is great and is really supportive but sometimes he just doesn't think and then says/does something stupid and upsetting. For example recently my back has been playing up and I haven't been able to get to Pilates for various reasons which hasn't helped. The pain is there always anyway but at a level I have learnt to deal with but what with the lack of pilates and picking baby Jacob up etc... the pain has been worse so I said to him I'll need to extra help (which is fine, he works from home and can usually take 5 mins every now and then to help out), which he did but then the other day instead of taking down the washing and changing the bed covers while I was finishing off Jacob's bedtime routine he just sat down and went on the internet. When I asked him why he thought that was OK when there was so much stuff to do he said that he thought I'd do it. When I pointed out that I still had a painful back and so would struggle he said sorry and helped. Its annoying because he seems to forget that I'm in pain unless I moan about it all the time which I don't do because I don't see the point, moaning won't make it go away. You'd think after 6 years together he would realise but he still slips every now and again. As usual I blame everything on his mother - if she bumps her knee we're hearing her moan about the pain for the next 6 months so he just thinks that if I'm not moaning and/or crying I must be OK.

xxxx

[cracker]

I had a comment from my mom the other day that really bothered me, as I thought she understood how EDS/HMS affects me. She hasn't been diagnosed, but has many of the issues I have plus a few more.
It was one of my fairly good days, and we made homemade marshmallows...after I'd worked on her taxes for three hours. I was walking her to the door when my knee and ankle twisted and I started limping.
Her response? She shook her finger in my face and said "now meggy, you were fine just a minute ago! You don't need to do that."
Another time she said "don't bother trouble" when my skin was turning colors (a reaction to something -not sure what) only later to say to my husband that it HAD been a different color.
It just feels like she thinks I'm faking it; though why anybody would is beyond me.

i get that sometimes from people in general & a few insenstive family members or so called friends ''you were fine a minuite a go come off it!!'' that realy gets me down some people say that

[trekster]

im shaking my head because ive had something similar with my mum. Anything a bendy does is normal because she does it.
guess what she has undiagnosed? HMS!!! Also clashing over my ASD in particular shes the cause of my near to no self esteem.

She told me i should exercise and get off my bottom more but she also tells me i dont need stupid pills. She cant have it both ways.
This groups excuse was because her landline wasn't working, she wont attend because 'i dont think you have hypermobility syndrome
because you aren't in a circus and cant contortonise!' she still doesn't believe the difference between 'hypermobilty' and 'hypermobility
syndrome'. This is long after i told her "mum you have seen the diagnostic letters and they cannot be faked".

When i tried to explain to my aunt that putting me on my front was a bad idea due to hypermoblity syndrome about a week ago her
reaction was, "i wish you would stop finding things wrong with you it is really annoying me". i had been the quieter calmer one for a
change and she blamed my abusive father on that fall out. Basically my aunty shouldn't have turned me over onto my front without
getting my parent permission and my father shouldn't have shouted at her when she did so.

im starting to see more and more explosive autism in my aunt and mum which is really scaring me. Neither of them support and
encourage me i just get shouted at for both my autistic, bendy and other types of disability behaviours.

[madmum]

I get that with my son. Even my mum questions if he is faking(thought she would understand). Either that or you get is it because he does not want to go to school,he is frustrated he is not in.

[cracker]

someone siad that to my mum about me & she went up the wall with them it a few of the 'nice' family members that take the pee or so called friends it even worse when randon people say it too but my mum & dad do bite back.

[BendyBoff]

My sister's friend was a bit insensitive the other day but think in a strange way she was trying to be nice when she said to my sister 'If I had to choose to have a disability I would choose yours because it could be fun, .' Sister then explained that it is painful and difficult not knowing how you are going to feel each day and hurting yourself all the time. Friend still insisted that it is the 'best' disability.

xxxx

[madmum]

A so called friend of mine said a few days ago(knowing the nightmares I had with my son as a baby with social services and subsequent health problems) I was thinking a naughty thought.. would you have been better off giving up your son and concentrating on your own health! Obvious answer NO!!!!!!!!

[Jooolz]

I think the insensitive comments that hurt the most are those from close friends and family. They are the people I expect to understand the most to be on my side - but when they come out with some insensitive stuff it always shocks me about how little they understand.
A very good friend was telling me how lucky I was that my part time employer was ok with teh fact that i had not been into work for months.... as she would not have tolerated that (for her employees)... now I know she is a VERY GOOD employer and goes beyond the norm in caring for and supporting her people - so ... what does that mean - that she doesnt think i have a genuine illness??? I guess so !!

[cracker]

its a nightmare why do people have to make comments if they don't know anything about what we go through on a daily basis

thats true flyingfairy i get some nice people saying when i on crutches 'you a cripple today?' my mum once heard it & she shouted 'well youre f*****g stupied!!' it group of teenegaers. (go mum)
what was funnier tho a policeman saw what happened and he went & had a chat to them.

i even had if u was dog you'd be put down. i just had to walk off i went to my aunts charity shop i had to talk her out of deacking the guy.

bigs hugs to you hun some peeps dont understand