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Make Believe Offline
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Considering yourself disabled - August 7th 2015, 04:52 PM

I have something called Ehlers Danlos Syndrome (Classical) I couldn't walk properly until I was gone three. Obviously that concerned my parents so they took me to various doctors and I was diagnosed when I was three.

I didn't actually go to the junior (elementary) school in my village because there were so many steps. I used to fall a lot and the teachers there told my parents to send me to a school about five miles away because it was flat and was designed more for kids with disabilities. I was actually in the class for kids with special needs for a year. They moved me to the conventional classes when they realised I didn't have any learning difficulties and found the work in the special needs class too easy.

I find it hard to walk for long periods, I have stretchy skin, my joints will just ache for no reason, my joints dislocate sometimes, I bruise very easily, I get tired VERY easily, my skin is very sensitive, I have anxiety (I now know that it's probably related. I've read that people with E.D.S. can overproduce adrenaline) etc.

I went shopping with my friend a few months back to Bristol and omg, I was in SO much pain the day after it was unbelievable I could barely walk. I'm actually considering hiring a wheelchair or something the next time I do something like that. I had a wheelchair when I was about 6-8 for when me and my parents had long days out.

I tried to ignore it when I was a teenager because I wanted to be "normal" I also tried convincing myself that the doctors may have been wrong. My symptoms of E.D.S. aren't as severe as others but they still effect me.

Only recently I've accepted the fact that I have this. The term "disabled" still bugs me though :| I know that I am considered disabled according to definitions:



(of a person) having a physical or mental condition that limits their movements, senses, or activities.
But I just don't like that word and I don't know why. Can anyone here relate?

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Last edited by Make Believe; August 7th 2015 at 07:06 PM.
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Re: Considering yourself disabled - August 9th 2015, 01:28 AM

I can't relate, but I do want to say that lots of people don't like being called "disabled" because of the negative stigma attached to it. I know some people prefer impaired, but really you can label yourself whatever you want. What it really comes down to is what your condition is, and what you can do in order to improve it.
Getting a wheelchair the next time you have to walk around a lot is an option, but so is taking beaks to grab lunch or just to sit and rest.
It seems in high school normal people want to be unique and dye their hair, wear different clothing, etc. to stand out. And others prefer to blend in. There's nothing wrong with either, but I hope today you feel more comfortable with who you are. It sounds like this condition is really inconvenient, however it makes you unique and that can be a good thing if you have the right mindset. You can either look at this as "I have trouble walking," or "walking is more difficult for me, but I do it anyway." So my best advice here is to try and stay positive about this which I know is easier said than done. Letting this get to you and cause you to feel discouraged whenever you want to go out isn't the right way to go about this, though.
Even if you are technically "disabled," that isn't who you are. I say drop the label and just recognize that some things are harder for others, and for you it happens to be walking for long periods of time.

And here you are living, despite it all.
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Re: Considering yourself disabled - August 10th 2015, 07:51 PM

Thank you I think it's because I was bullied a lot in school for other reasons and didn't want to give people anymore reasons to do it >.> My dad keeps telling me to apply for a disabled badge to put in the car so I don't have to walk as much. It IS a good idea but that's what really got me thinking about all this :/

Thanks <3

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Re: Considering yourself disabled - August 12th 2015, 08:53 PM

I can relate to disliking the term disabled. I am completely blind and my disability is not possible to hide because if I do not have someone guiding me, my guide dog or a cane I cannot go to places without running into people or objects in front of me.
I have been against getting the badge for cars because of my blindness but their are circumstances I am realizing where having it would be very helpful. For instance when I am with family and we are going to a store. If we have to park several rows back in cars, it can be hard for me to direct my guide dog so we go in the appropriate entrance because I do not know which direction the door is in compared to where we park and stores have enter and exit doors.
I do not generally talk about my blindness because I try to fit in with everyone else but the conversation about it comes up whether I want it to or not. People are always wondering how I do things, if i can do what they can and the never failing question "why are you blind" or "what happened?"
I believe with your acceptance of having EDS being relatively new that your acceptance of needing a badge for your car and other assistive needs (such as a wheelchair at very busy places) Etc. will come with time. I have been blind since birth so assistive devices and techniques were taught to me at a very young age so having to adapt is all I know. However, if I were to have lost my sight as a teenager I would probably be as you are in terms of acceptance.
In regards to the term disabled, I do not believe it is a term we have to agree with. It is mainly for medical purposes, so people can get what they need to help them and it is a blanket term for many conditions. I do not use it often. I just say I am blind (because my vision is as impaired as it can get) and that is that. It is a personal choice to use the term.
I hope that helps in some way/is the sort of response you were hoping to receive.
You can PM me if you would like; I do not mind talking to you about the challenges of having a physical impairment (that is another way to word it).
One last thing, your inability to walk long distance can be made up for by your ability to do other things. When I start to feel down about not being able to drive or shop on my own, I remind myself that it is okay if I need help in those areas because even people without such issues have problems/difficulties with something.
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