Anyone else had the same experiences?

brew713

Hi everyone hope your all doing well. I'm writing on here to help me with my overwhelming anxiety and stress. I suffer with eds and have quite limited mobility. Due to this I've suffered scornful looks and comments when out in public and am currently getting help from let's talk. I was wondering if anyone else has had the same experiences and if so how your deal and feel about it. Thanks

[Deleted User]

Hi @brew713
Wishing you a very warm welcome to the community  

I'm sorry to hear about the difficulties you are going through and the  negative experiences you've had when out in public and I hope the support you are getting from let's talk works for you.

You've definitely come to the right place here, this is a very supportive community and I'm sure other members will have great advice on this topic. 

Don't hesitate to ask if you ever have any other questions!

steve51

Hi @brew713

Welcome to our online community/family.

I’m one of the Community Champion’s here at Scope.

I have got a good friend here who will be able to offer you some help & advice  with regards to your 
“EDS”

Hi @chiarieds

Can you please offer me some help with this post with regards to there “EDS” and there other concerns.

If you have any other concerns please please let me know!!!!

@steve51

chiarieds

Hi @brew713 - & welcome to the community. Thank you very much for the tag @steve51 . I have the hypermobile type of EDS. I don't worry about what people think. I use elbow crutches when I go out, which is rarely. I sometimes get people asking what I've done, thinking I use them because  of a possible fracture. I just say I've got a genetic disorder which has affected my joints with osteoarthosis, & I find that less weight bearing is less painful.

If anyone 's just plain nosy, I say I've got the hypermobile type of Ehlers-Danlos Syndrome & Chiari 1 Malformation that can be associated with it. That usually stops them in their tracks.

Most people don't ask, & most are helpful; not questioning what's 'wrong.'

I'm sure the anxiety & stress you feel can't be helping, as I find any stress worsens my pain. I'm pleased you're receiving some help for this.

Anyway, I'm here every day if you want to chat. EDS is a difficult condition; it's finding the best way to 'manage' it. I'm sorry you've had some poor experiences, but you will find a lot of understanding here, so please use the forum, & let us all know how you're getting on. My best wishes.

steve51

Hi @chiarieds

That’s great thank you very much for your help/advice for @brew713

It’s very much appreciated ?

@steve51

janer1967

Hi @brew713 Welcome to the community, and I hope the info you have been given has been useful, I just wanted to welcome you and look forward to seeing you around

Chloe_Scope

Hi @brew713, great to have you with us. How are you doing today?

leeCal

I was talking to someone this morning about people making negative comments and it reminded me of how I sometimes feel able to deal with it. Basically words are sounds in the air, my ears pick up those sounds and translate them into words if possible and then my mind responds to those words. We do have a choice though whether we respond to this words or not, since they are only sounds we can choose to let them pass by without our responding if we so wish. We have a choice to not respond, to think nothing in response, what could be simpler than simply thinking nothing. 

I know, perhaps it’s easier said than done, if youll excuse the pun, but it is true, we do have a choice to let others words upset us or simply let those words float by without response. That way we can remain in a balanced mood and enjoy our day more easily. After all quite often people make negative comments out of ignorance, they simply know no better, therefore why should we let their words upset us.