Life Before Diagnosis

I'm talking about all the things I went through before I had the Ehlers-Danlos diagnosis. All the testing, the pressure of keeping up in school, dealing with classmates the treated me badly. You AREN'T alone!!! Hang in there and don't give up if you have a diagnosis. High school is hard enough as it is, then having an illness on top of it makes it even harder. Even if you know your illness, stick with the people that truly care about you and understand.

Category:

People & Blogs

Tags:

• Illness
• in
• highschool
• Ehlers
• Danlos
• Chronic
• dealing
• with
• classmates
• testing

[deb310red]

Thanks for posting your video. It's very helpful.

[DarkWaterfall]

@deb310red Glad you liked it! 

[DarkWaterfall]

sorry it took so long to get back to you, i only have intermittant internet up here at NEADS, and it's going great!!! Of course you can friend me!

[ReineDeLaSeine14]

Patellafemoral syndrome :)

[DarkWaterfall]

That's the one!!!! thanks! Thank you all for your kind words. It means so much!

[Tezotvoorwoorden]

It's all like "deja vu" for me! even the patellafemoral syndrome and so on... Now I am into SHIT with youthcare because of my lovely daughter! They are not believing any stuff from Ehlers Danlos, although it was diagnosed officially by serval doctors! Now they are willing to stick the label "Asperger Syndrome, Autism" on our heads. Wich I refuse ofcourse to believe!

Autism has nothing to do with sub- & dislocations and so on!

Hug from Belgium xxx karine

[CRAZOproductions]

your so cute

[bojannnn09]

you`re hot!

[mohammedhosen696]

i feel so sorry for you ...seriously ...

i hope u get a real cure for your problem ....dont give up

[kandinsky51]

"Oh it's growing pains"

"No, we were mistaken, you have Rheumatoid Arthritis"

"No, we were mistaken again, you have EDS Type III"

¬¬

[longlakeshore]

This is one place where you can be an advocate to others, using your wisdom and experience to help young people cope with an EDS diagnosis. Come to think of it, you already are by posting this blog.

When surgery left me in brutal pain, everyone thought I had a "nervous breakdown", the A student bound for a PhD or MD suddenly dropping out of college. Many family and friends still do because they do not understand chronic pain as a disease, and still doubt that my pain is real, 26 years later.

[xpsykoxpixiex]

Wow...this is kinda messing with my head, lol. Everyone says we look "way too alike" and I agree =S I also have EDS (they can't decide whether it's Type 1 or Type 3, but that's medicine for you, lol), and I've had an ED since age 11, which I link to the EDS. I did choir for years, but now I focus on visual art (mostly drawing and painting).

Bah, "kids will be kids" indeed. The kids in my class invented "Emma Germs" and decided I was contagious.

Permission to friend you? I'd so love to chat =]