I have a bit of a worry and need to get it off my chest. I have EDS and like many of you guys here it was missed for ages, I got called a hypochondriac with too much access to google etc before I finally got my diagnosis. Then the doctors checked for other issues and found the connective tissue issues were kind of obvious if you knew where to look.
Anyway I am 24 and I live it at home, and due to my worsening health and the fact every stupid injury I had as a child catching up with me all at once, my mother (who probably has EDS herself and I would put money on it) has become my main carer.
This made me feel very depressed. I kept thinking to myself if I ever want to move out I can't really because I can't look after myself. The parent child relationship instead of the parents looking after the children till they can care for themselves has gone completely backwards in my case. I felt awful because although my mother didn't seem to get the full blast of EDS herself or it didn't affect her so badly till much later in life she has troubles herself and she can't keep doing all this for me and herself forever.
I was worrying about it one evening when I saw an advert on facebook for a service dog charity and followed it and they were about to open applications and work with people with Ehlers Danlos. So I applied and they picked out people to invite to the next stage which is applicant day to start the process to join their waiting list, at random with a computer and I got chosen.
One of the ladies who worked for the charity phoned me and asked a few questions and what was weird was she not only knew what EDS was she knew about the all the commodities that come along with it and asked me about that.
The applicant day is tomorrow. There is one thing worrying me. I looked on their website for case studies and everyone on the website was in a wheelchair.I don't use one right now. I mean I am looking at getting a mobility scooter and a hoist for my car because I can't lift anything heavier that a book without a shoulder popping out (thanks violin). But most of the time I limp round, either holding onto furniture in my house and office, like places I know well. Or I use my smart crutches. Its partly stubbornness and denial that I have not looked into it before but I am speaking to a therapist about that. I think maybe because I did swimming classes every week from age 7 to 16 and trampolined for hours a day in my garden, it strengthen my legs. I accidentally kicked my friend in the shin in year 8 and by the time we finished sixth form at 18 she still had a dent in her bone. Trampolining may have screwed up my spine and hips up but my thigh muscles are still good.
I have checked the application guidance 5 times and there was no mention of being a full time wheel chair user, it just said physical disability and over 18 and stuff about being able to afford the costs of dog etc.
Like many of you, I look healthy and fine like a normal 24 year old albeit with a bad leg due to my crutches, until I try and bend down or do anything and my colleagues call me jelly wrists for that reason. But I am absolutely terrified I will walk into that applicant talk with my crutches they will say I am sorry you aren't disabled enough we will have to withdraw your application.
Anyone else have that feeling of am I disabled enough? When using disabled bathrooms or seats or applying for benefits. I know logically that I am entitled to use some of these things and apply for other benefits and help but in my head I keep hearing the voice of you aren't disabled or you aren't bad enough to need it or get it they are people much worse than you. You should withdraw your application now and save yourself the embarrassment, because you're just a hypochondriac and the staff at the dog place will see through you instantly.
Thanks for reading if you got this far, I need to let that out. Its been bugging me for a while and the applicant day is tomorrow, wish me luck.