Sorry, but I'm fed up with people on social media saying how tough it is to have a hidden disability and how easier it is for people with a visible disability. Unless you are a full time wheelchair user (or have some form visible disability), you will have no idea what it's like.
You can't walk down the street (or simply sit down at a table minding your own business) without someone starring at you, making insensitive comments. We even get abuse when using the disable facilities, despite the fact you can see Jess is using a wheelchair. The list goes on. Some days it can be continuous throughout the day. Surprisingly, we often get abuse and staring from other disable folk who should know better.
You might see Jess' wheelchair, but her disability is still hidden as you won't know what is wrong with her, and the same goes for other visible disabilities.
Please don't look or ask questions, not only is it rude, but you won't be the first or the last person to do so that day. It gets very annoying for the disable person, plus it is an offence as it comes under the hate crime harassment laws.
You don't ask someone wearing glasses or a hearing aid "Whats wrong?"
It is human nature to be curious and wanting to know. I don't tell people whats wrong with Jess for several reasons, for a start, it's her medical condition, it's confidential as it's between Jess, the hospital and myself.
Jess' condition is so rare that as far as we have been told several times over the years and with a recent hospital appointment last week that her medical situation is unique and that there is no one else out there like her that we can be put in touch with for some mutual support.
Because her condition is rare and complex, people just don't get it or want to understand it.
We also come across people that are not her hospital specialist that think that they know better and try and tell us what we should be doing.
The last reason why we don't tell people, is that we soon learn't that the world is full of hypochondriacs, when we used to tell people what was wrong, it was amazing how many people said that they had Jess' condition and that they were able to do all the things that Jess' was unable to do (despite Jess being unique and no one else out there with her medical situation)
One thing we have learn't over the years, is how people behave around Jess, and it is disgusting how people do behave, we simply see them as bullies and they are simply picking on the weak.