i cant believe the disrespect in some... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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i cant believe the disrespect in some people.

littlemissshy profile image
31 Replies

some people were walking behind me the other day from my school, they said very loudly to each other, why does she have gloves on, they were a few meters away, i was going to turn around and confront them, but i decided it was too much effort to waste on obnoxious people. then a teacher in my class said, oh you dont need them on its plenty warm enough, then he scowled at me and walked off, a minute later he came back and repeated himself, that time i said that its a medical reason, at that he raised his eyebrows and glared at me, then i said i have a medical note, at that he said oh really, really sarcastically, shook his head and walked off!! that really annoyed me. but later that day my form tutor said that if anyone gives me any trouble to tell them to see him...so i have some support :-)

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littlemissshy profile image
littlemissshy
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31 Replies
zenabb profile image
zenabb

Yes, it's hard, but at school anything is made fun of. If it's not one thing it's another. Keep a copy of your letter with you to show if necessary. Though someone might tear it so have another one. I am very glad you have some support now. USE IT.

Love and best wishes.

littlemissshy profile image
littlemissshy in reply tozenabb

yes thats very true, i will get the letter photocopied a couple of times and then keep one handy. thanks, and to you too x

Skwiglee profile image
Skwiglee

Thank heavens for your form tutor! Do your teachers have a weekly meeting? If so, perhaps your form teacher could put you on the agenda. That way all the staff will know in one go. Just a thought. Xx

littlemissshy profile image
littlemissshy in reply toSkwiglee

yes he is very supportive, im very glad he is my form tutor. yes, i hadnt thougght of that before, i could mention it to my tutor, he would be willing to....thannks!! x

Skwiglee profile image
Skwiglee in reply tolittlemissshy

Hiya!

It sounds like you are picking up quite a few ideas. It might help to roll your eyes and look bored, the next time someone mimics you. They're only trying to get a rise out of you. That's why I suggested getting fashionable fingerless gloves etc. From Claire's Accessories or Boohoo.com. So that they won't label you a granny or whatever.

Whatever problems you encounter. Don't worry about them, as that only makes matters worse. But try and find a solution that's beneficial to you. I'm not explaining this very well. Yes, you are different but make that a good thing, a cool thing!

A lot of people say that what they learnt at school was useless. As I explained before, I found what I'd learnt in biology to be useful. I don't know how they teach home economics now. But I have never forgotten the vital vitamins and minerals that we need for good nutrition. So try engaging your tutors, so that they can teach you what you need to know for your life.

I know I've said this before but I highly recommend 'The Power of Now' by Eckart Tolle. This should make life a lot less scary. Right I'm off before I lose my connection! Xx

Skwiglee profile image
Skwiglee in reply toSkwiglee

And 'How Your Mind Can Heal Your Body' by Dr David Hamilton :)

littlemissshy profile image
littlemissshy in reply toSkwiglee

heya!

yes i am, quite a few people have been recommending i see the school nurse.....i just "try" and ignore them, although it does tend to bring me down. yes they do teach a bit, although i only have cooking for a term a year, and as of september not at all. biology i find helpful though. ill look into it and thanks for the support, i really appreciate it. all the best,

Littlemissshy xx

Skwiglee profile image
Skwiglee in reply tolittlemissshy

Have a great weekend, sweetie! I've had another no mitts and flip flops day! Yaaay, summer's coming!

I work at a horse charity on a Friday, it makes my week. Xx

littlemissshy profile image
littlemissshy in reply toSkwiglee

Awr youre lucky, im in the uk and it has been overcast all day, but im going camping tomorrow with my mum dad and sister, yesterday was glofious thkugh, 20 degrees, although gloves were still needed :( its quite warm now, 8:30 and 8degrees.. hopefully it will get better! All the best,

Littlemissshy xx

asilva80 profile image
asilva80

don't let them bully you stay strong and remember most people won't understand the pain and inconvenience we have to go through just to try and live a somewhat normal life.

Noddy32 profile image
Noddy32

As per an earlier comment I made, on a similar case, as a sufferer and an ex parent governor

All schools have a bullying policy - ask to view it and get a copy

Just because your disability is not obvious

(as say someone in a wheelchair, whom I am sure teachers and pupils would make allowance for and support) you are being bullied

Make a note of who, when and where - then go and see (or get parent to) a parent governor, head of pastoral care or the head teacher and state politely that you are being BULLIED because of your DISABILITY, and that this is a breach of the school bullying policy

littlemissshy profile image
littlemissshy in reply toNoddy32

thanks for the support, i will look into it :-)

It comes down to lack of knowledge of the condition.

He is a teacher and not a doctor so can be excused a little, but I would have hoped a teacher would be more aware and prepared to educate himself.

Maybe you can help him by printing out this page or taking some leaflets into school. As others have already said the school staff need to be made aware of your condition and how it may impact on school activities.

littlemissshy profile image
littlemissshy in reply toovernighthearingloss

overall, he isnt a very pleasant teacher so its kind of what i expected, although it would have been nice if he didnt scowl at me for it. this teacher hasnt been very nice, he called a group of maths students whom were in the lower set not very nice words. like you said i have spoken to my tutor, my home economics teacher and my pe teacher as the other day i found it especially hard. in home ec, the teacher had to take the skin off and de bone my chicken for me, in pe i did 100m and my legs were killing me so i took measurements on the long and triple jumps instead, they were hurting so much i had to take some tablets when i got to the primary school...thanks x

AliW profile image
AliW

Bless you - this sounds all so tough for you -

Definitely look into the bullying policy - & make a little note of incidents when & where & what was said.

Someone said to me the other day - ''oh dear look at you with your gloves on! ' It was on a suuny day earlier this week - & I just said I have a circulatory problem & he soon shut up ! People can be very ignorant :(

Chin up & remember we are here for you A XXxxx

littlemissshy profile image
littlemissshy in reply toAliW

hi, yes it is hard, especially when people start talking about me and mimick me saying, i have a medical condition. thanks, and yes they can, those who you expect to be nice arent always, and thoses who you dont expect to be nice sometimes are. i always feel so awkward :-( thanks! L xx

Kuhu profile image
Kuhu

My late sister was hard of hearing. This is also a condition not well understood, especially in younger people. She designed a badge, which she wore all the time and which she pointed to when people were shouting at her because she couldn't hear them. (She could see their annoyed faces!).

Maybe your Art teacher could help you to design a badge and also an awareness poster.

Can I ask which year you are in school and where?

In many schools, as has been said, there is information for staff about all students with medical problems. It should be in every school. I have seen it on the Staffroom noticeboard in some schools I have visited in England. Please ask your Form Tutor to make sure you are on that list.

littlemissshy profile image
littlemissshy

i will, the good thing is i am quite creative, so i should be able to at home, but i might in school anyway, as my house is very cold as its an old cottage. and i am in year9 of crickhowell high, wales. thats interesting,i didnt know that, thanks,ill look into it! thanks for the support, i hope you are ok? all the best, L xx

wartsandall profile image
wartsandall

Hello littlemissshy..........Rise above them !!!......don't listen to their comments....keep a copy of your medical note with you to present to your teachers whenever you encounter any problems......you don't have to explain yourself to anyone other than your tutors, you are an individual who has a health problem.........But....on the other hand......maybe you could educate your peer group!!!!!..... perhaps you could turn the negativity surrounding you around and develop a project........you could design posters and give your class mates a presentation on your health problems,....... how it effects you and how it is managed......ask a teacher or a reliable friend to help you.... do you have a school nurse ??....student nurses who work along side community and school nurses could help you with your project.... please don't worry yourself..........from my own personal experiences.......people are more understanding and much more sympathetic and understanding if you talk to them about your health problems.......explain how you feel and you will be surprised how supportive indivduals can be......take care littlemissshy...good luck xx

littlemissshy profile image
littlemissshy

hi wartsandall, i could try, we have a school nurse, but she is only in certain days, i could look into it though. it would be helpful....i could get her to create leaflets/ do an awareness thing....im not sure what but ill have a think. thanks, all the best,

littlemissshy xx

Rp321 profile image
Rp321

Honestly ignor then - I get strangers say to me "it's not that cold "all the time i usually smile and walk on but once I took my gloves off and put my hands on his arms to which he replied " oh my god I take it back maybe it is that cold" :) I didn't say a word and walked on. I wouldn't suggest doing that at school though :)

Defiantly match gloves to outfits in the summer - make it like an accessory. For me personally winter is resigned to my big fat ski gloves.

As for friends - well my close friends know all about it - others have just got to know that I am cold and wear gloves always. I was diagnosed around 17 ish so missed out on the mid teens bit so it's a bit difficult to think what I would have one when I was young. Although I did go through a phase of wearing socks on one on my hands I had a split on so couldnt wear gloves because it was freezing (raynauds but I didn't know it) and I just said my hand was cold when people asked why I had a dock over my cast.

At the moment I want to shout out IT NOT THAT HOT ! to all the nutters in shorts and t shirts over the past couple of days lol.

littlemissshy profile image
littlemissshy

The next person who asks i seriously will put my hand on their arm...it'll probably freak them out but it'll teach them not to accuse me of not having a real condition...most people are like uugh why do youhave gloves on, im like, cos i have to. It doesnt help me, this condition, as i am generally shy anyway, without people judging me for the wrong reasons...anyway thanks for the support!! :P

Blue-Bunny profile image
Blue-Bunny

Did you know that a Parent's written letter overrules a Teachers request at every moment? The parent can demand that you not be let out at break times, or that you are not allowed to be given a detention or given homework. As long as the work is completed, they have no say whatsoever, just get the note from your parent, signed. Both of them if at all possible and to ring them if there is any problem. The board of governors and the Education board can and do over-rule teachers in these matters.

My advice is if you're able to, show them your hand once it has changed colour. It's often really visible, unless you're like me where the colour change has stopped thanks to nifi, I just get all the other symptoms instead now.

As Kaz suggests, touching them is often the best way for it though! As cold hands are just as obvious and we have this immunity to hot weather it seems too. >.<;

littlemissshy profile image
littlemissshy in reply toBlue-Bunny

wow, thats interesting, i have a note from my mum in my 'planner' which i decided i would just show to any teachers i have for lessons, as if i have an attack, it would take ages to get the note to show it. i might get my mum to email my biology teacher though, as he mentioned raynauds very briefly in my lesson on tuesday, so maybe he could give a bit of info to the kids. most teachers are nice though, eg my cooking teacher came up to me in lesson and said are you ok, i said yes, then she said well if you want to talk im here. so i took her my note after i finished cooking and she was like, ok, what do you normally do in an attack and how can we help etc.... she was very nice. thanks for all the info, ill look into it, how are you??

AHM42 profile image
AHM42

The Raynaud's & Scleroderma Association has a leaflet on Raynaud's in Teenagers and Youngsters. It is a free publication and explains why you should take care at school. Why not send for a few copies and keep them with you to show to school nurse, teachers, pupils etc? You can view it at raynauds.org.uk

Blue-Bunny profile image
Blue-Bunny in reply toAHM42

Aside from them all going, "EWWWWWW LOOK AT THAT IT'S ALL BLUE AND FREAKY LOOKING"

...I get this from adults, so I can only imagine what school children are like...

littlemissshy profile image
littlemissshy in reply toBlue-Bunny

yeah, i get A LOT of questions from both adults and kids. some are really nice about it, but some are just horrible.....

littlemissshy profile image
littlemissshy in reply toAHM42

yes, i have seen that, im going to email my biology teacher (im not confident, at all!) and send him some of these leaflets and ask if he can teach the class about it, i want him to because i dont want people being afraid to ask, but i dont want them to judge me, its the only way around it i think. thanks x

bookworm profile image
bookworm

Hiya didn't get diagnosed until i was in college, it's people's ignorance, that's the problem. It took me awhile to ignore people's comments but the support you get on here helps, as people know what you are going through and don't judge. I also have a problem with my speech and the amount of times I have people say " slow down or just remember to breathe" and such comments its like duh, if it was that simple I would be doing by now. Sometimes you have to grit your teeth, smile and take it with a pinch of salt. Your better than people who make stupid comments and stare.

littlemissshy profile image
littlemissshy in reply tobookworm

thanks a lot, im the same, always speed talking, so to say...

people are ignorant and rude unfortunately.. i would carry a paper with bold print telling them that you have a disease requiring your behavior and ask them what their excuse is..

most of all don't let them get to you..their ignorance only shows what disregard they have for others. one day it will come back and kick them in the butt..trust me i am being kind...

good luck..tassia123

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