Stranger's comments for wearing a KAFO

Wheezy

Hello lovely people,

I apologise if this is posted in the wrong place or has been covered before. 

I am a part-time wheelchair user (I use it when I am out and about but use crutches/zimmer at home) and I am about to get my KAFO for the first time. 

I have spoken to the orthotist about what to wear under the KAFO and he pretty much said that as long as there is something between the brace and my skin, I should be fine. Leggings (as long as they don't wrinkle) or tights or a long sock etc.

So, as I might be seen wearing it on top of clothing, I am more aware than ever that people will look, stare, and likely comment.

The looks and stares don't bother me that much, but I HATE comments like "oh dear, what have you done to yourself?" I haven't done anything!

I know that most people mean well and this is an overreaction on my part, but how do you all respond to comments like that? 

Alex_Alumni

Hello @Wheezy I can understand where you are coming from as a part time wheelchair user myself.

When people catch you on a bad day it can be hard to brush it off, as Teddybear says it's not an overreaction because when these experiences build up it becomes very tiring to deal with. 

If I had to guess I would say most people are asking out of curiosity, but cannot see how unnecessary, personal, and sometimes plain rude the question they're asking actually is. 

The way I respond varies day to day and depends on who is asking, sometimes I'll make a joke, sometimes I'll tell people it's not their business, sometimes I'll ignore them, and sometimes I'll answer them straight. 

If you are being made to feel uncomfortable by anyone it's important to remember you're not under any pressure to answer them. Do what feels right for you. 

If it's okay I've edited the title of this post so it's clearer to know the topic. I hope you get on well with the KAFO, keep us updated

Alex 

Wheezy

Hi @Teddybear12 and @Alex_Scope,

Thank you for your support, it can be difficult to talk to people who are close family and friends but who can't understand what I'm facing.

At the moment, I have an AFO and while this helps with my lower leg and foot, my knee is unstable and I have hypermobility, so it either goes too far back, or buckles forward.

I've had the "what have you done to yourself", "what happened to you", "you don't look disabled" - although I probably will look disabled when people notice the KAFO.

I had an extra stair bannister and grab rails at the front and back doors fitted this morning. I was looking forward to getting it done as it will really help with getting up and down the stairs more safely, and now that the work has been done, all I can do is cry! What a roller coaster!

I'm glad that I'm not the only one who struggles with the comments people make 😊

Alex_Alumni

I'm sure the bannisters and rails will make a world of difference @Wheezy  

I'm glad the community helps you feel supported too. The KAFO will be a change, so give yourself time to get used to it.

Wheezy

Hi @Teddybear12 and @Alex_Scope,

Yes, taking stairs and going in and out the house certainly feels safer now that I have something solid to hold onto. 

I really don't mind comments if people are just curious - before this, I worked in operating theatres so I'm used to explaining things to people who aren't medically trained. It's the stupid comments that bother me and, like you say @Teddybear12, why do people feel the need to comment at all? 

Able-bodied people don't question each others health while they're standing in a queue, why are we different? It's almost as if they feel if they don't ask about it, they're ignoring the disabled person, when really, they're just letting us get on with our day. Weird! 

ProudMumForever

@Wheezy , hello . Im sorry to hear that people have been making you feel like this . Often its peoples lack of knowledge ,understanding or their just being nosey . Disabled people should not have to justify themselves to anyone. Its easier said than done to ignore the stares and comments, words can hurt. But remember that you are worth so much more . 
I speak from experience as a Mum of a 15 year old son who has Full body joint hypermobility,sensory processing disorder, dyspraxia .Who still struggles decending stairs ,he steps down one step at a time . People stare , we smile  😊 because he is so much more than what people see . He is in the top sets at school and in his mock GCSE's he gained scores of 9's mainly and some 7's (the grading system means a 9 is equivalent of an A*) . Theres nothing that will stop him . You take care of yourself  x

Wheezy

Hi @ProudMumForever,

Thank you for your kind words and reassurances, it means so much right now.

Your son sounds like an absolute superstar! It seems like he has drive and ambition and will go far!