To never want to go on a bus ever again

[ariane5]

This is not the first time i have had an experience like this although it was by far the most horrible.

Myself and 3 dcs (9,4 and 1) were travelling to my mums by bus, all 3 dcs have the genetic condition Ehlers-danlos syndrome (causes them to have frequent dislocations, joint and muscle pain and fatigue amongst other symptoms) so journeys are always difficult especially as i dont drive and cant always afford taxis.

Anyway, i have a double buggy for days when ds is really bad and rest of the time if he isnt in too much pain he will ride on a buggy boardh is what i was using on the bus with the baby in the buggy,we got on and it was relatively quiet so we all sat down, it got a bit busier so i gave up my seat for an old lady, all was fine untill the next stop where LOADS of people got on, one lady with a wheely basket decided to start shouting at ds 'move,move i need to sit there'so i had to say to her 'no, im sorry he cant move he needs to sit down' and she asked me why, i just said that he has a joint problem and if he stands and the bus suddenly brakes he would dislocate something, she looked at me, tutted and went and sat down nearer the front and kept staring at me and tutting!

I thought that was the end of it untill another old lady turned to the person next to her, pointed at ds and dd and exclaimed 'LOOK at those children sitting there, its disgusting, absolutely disgusting she should be ashamed of herself'next thing i know about six eldery people are all looking at me and the dcs saying how disrespectful iam not giving up seats for other people and how the dcs look perfectly healthy to them.

I wanted to cry, i got off that bus shaking it was horrible i dont see why i have to explain myself to rude people like that as to why my dcs are sitting down. I always give my own seat up if needed and i now feel like never getting the bus ever again it was that horrible.

So sorry for you OP, I have Ehlers Danlos (although not to the extent of dislocations thank god) and PoTS so I know how rubbish it is having to sit down and feel like the worst person in the world for not giving up your seat. I hate being questioned and having to defend my need to sit, especially as I don't look ill, they're difficult conditions to explain and I actually find walking easier than standing (which makes me feel like fainting) so I look healthy getting up and walking away too. I hope you overcome this horrible experience and don't let it stop you from taking them out and about. They deserve those seats!

A rather unchristian thought I know, but would love to use this as a response

I'll tell you about my medical problem when you are prepared to tell everyone on the bus about your prostrate problem/ urinary leakage :)

Eagle - there must be some bible passage that makes this acceptable

YANBU, sounds dreadful :( Thankfully it's only happened once to me when I had just come out of hospital after a major operation and was at my GP's surgery getting more pain relief. The waiting room was really crowded because the duty doctor was running an hour behind and I had one of the few available seats. I looked absolutely fine so got lots of glares and pointed remarks from people standing (eldery, with children etc.) but was in far too much pain to bear standing for any length of time and was finding even sitting a struggle. I ignored everyone though - why should I or anyone else in that situation have to explain their medical history to complete strangers?

Eye for an eye, tooth for a tooth, medical history for medical history? :o

If anyone says/mutters something along the lines of your DCs looking too healthy, just say:
"Oh you're a doctor are you?"

That shuts them up (unless they are a doctor, in which case they shouldn't be so crass)

araianeYANBU

I really sympathize with you.
Just carry on doing what you need to do and try not to let these people get you down.
x

Whatever the ins and outs, the wrongs and rights,

what a bloody horrible experience for you ariane, absolutly horrible. Trouble is once this has happened once or twice you expect it and get all wound up even before you step foot on a bus.

You did explain, not more you can do and sometimes people will continue to hurumph and tut because they want to be right.

Keep on with the driving lessons. I know it might seem impossible now, it did to me. Once you have passed your life will change and this will be a distant memory.

As for those women on the bus - Fuck em, Fuck em sideways!

You poor thing.

Similar with ASD and melt downs, the Autism Society used to make little cards you could shove at someone when they made comment/were obviously disapproving of behavioural issues.

It might seem a bit drastic, and a bit of a PITA - but might it be of help? If only to save your breath and sanity?

Something like:

I have Ehlers-danlos syndrome
It causes my joints to suddenly dislocate with sudden movement
I am not lazy or rude or idle
But my need is probably greater than yours at the moment
Thank you for your patience.

SOME old people just enjoy being outraged, and if there are a group of them they all get together and enjoy being outraged together.

Keep going on the bus and you will eventually grow a big thick rhino hide (so I hear).

i personally sit in the disabled seat with DD and am just waiting for someone to tut and hassle me (although she probably has more obvious SN)

Don't let em grind you down!

I get tuts and stares quite a bit. Mostly I dont let it bother me. Sometimes it does upset me but usually when I am upset about something else.

Someone can be a right numpty and I will just 'whatever'. Then one little dirty look will have me telling someone about themselves in the middle of Sainsburys [eastender emoticon]

Its the most horrible when DS notices someone is being unkind. I get really cross then and afterwards want to cry.

OP, I sympathize but I really think you should explain to others. It is not right that so many healthy people sit when those weak or with disabilities stand, and it should not be made acceptable any further than it is already.

I speak from experience as my young tall slender healthy-looking dh had a major accident, was in coma and rehab hospital for 1.5 years to learn to walk etc. He still has major coordination issues and weakness in his legs, but these issues are visible only when he walks. If someone looks at him disapprovingly he just says "sorry, but I am disabled and have to sit" and he never encounters any aggression afterwards.

she did explain

I have severe hypermobility and related symptoms, which may or may not be Ehlers-Dahnlos, no one's entirely sure and I'm living with it well enough I currently do not have the energy to push for a proper diagnosis, but I get all the same symptoms as your DC. I have learned to deal with the tutting and huffing on the bus with an Evil Death Glare. If someone actually says something I explain, politely if they're polite, more snappily ('Not all disability is visible. I look young and healthy, I'm not, I am in a lot of pain and will injure myself if I stand while the bus is moving, so I won't be leaving my seat.') if they're not. It usually does the trick, when called on something most people will remember basic human decency. The ones who don't aren't worth my time and can enjoy the death glare.

"she did explain"

I know, but it would have been better to explain again rather then simmering quietly and now considering to abandon bus travel altogether...

I am not critical of OP, on the contrary, we are in the same boat. But it is better for the OP as well as the others if there is no tutting around. And lets face it, 9 times out of 10 when children sit and weak and elderly stand it is not because of hidden disabilities but lack of manners and "every man for himself" mentality...