#ints original ask

[i-need-that-seat]

I hope this isn't a weird ask or anything but I found out about hypermobility syndrome today and now I'm thinking I might have it... I score 5 on the Beighton Scale, maybe more because I can't tell if my knees/elbows are unnaturally bendy, and I sometimes get joint pains that I've always thought were because of bad posture but now realise might be bc of hypermobility... do you have any advice for a scared 16yo? pointers on possibly getting a diagnosis, thoughts on if I might just be paranoid?

First of all, push paranoia aside. If you feel you have symptoms, you can (and should, if you want to) explore this. Find a doctor who has heard of hypermobility/EDS. This could take a while, but I know others have had luck with rheumatologists, physical therapists, and geneticists. If they can’t give you a diagnosis, they should be able to point you to who can.

Also, self-dx is fine! Do some research of your own. Even if you’re going to see  a doctor, arm yourself with knowledge so you can best advocate for yourself. You’ve already tested your own Beighton, so you’re on the right track. Use tumblr to search for hypermobility, EDS, etc. People post articles, research papers, experiences, etc. Do any of them sound familiar? Reach out and see what you can learn.

It’s possible, as you may know, to have hypermobility without EDS. If you’ve got bendiness and some minor joint pain, you’re a pretty good candidate. Listen to your body and figure out what makes you the most comfortable. Stay hydrated and take care of yourself.

And don’t forget there’s a whole community of us out here on the internet. Find some support groups on Facebook, follow people on Twitter and Tumblr and Instagram who speak to you and your experiences. Welcome to the best group you never wanted to join.

[i-need-that-seat]

You don't trust doctors because an eye doctor doesn't know about a mostly skin and joint issue? Really.....?

If you were paying any attention at all, you’d see that that was a post I reblogged, not my own. I’m not sure what conditions the OP has, but it really doesn’t matter.

So many of us have had the experience of a doctor looking up our symptoms right in front of us. Asking us to define medical terms. Asking us to spell things out. Asking us to be their teachers. In addition to the emotional labour, it doesn’t really instill confidence.

My mistrust of doctors comes from a host of places and experiences. This is just part of that.

Next time you want to be fucking rude to a stranger, at least have the decency to get off anon.

[i-need-that-seat]

Someone else with EDS whose tried Kt tape! Be careful - If plasters etc. Don't stick to you, it might not either, my skin is too smooth so it just rolls off. However if you can get it cheap to try I reccomend it

I know many people with EDS seem to have problems with things sticking to them, but that hasn’t been a huge issue for me personally, so I’m not too concerned about that. My main concern is making sure I know how to actually use it!

Any suggestions on where to get it cheap?

[i-need-that-seat]

Have you ever used KT Tape? They used it on my knee after I sprained it and I swore that they were using some sort of dark magic or something. I recently remembered it again and am now literally taping my joints together to alleviate some pain. Currently have my hip, shoulder, and knee taped up. Bit of a hassle when first taping, but once it's on, it's like freakin dream. Like, for once I want to cry because of the relief rather than the pain! I only wish it wasn't so expensive...

I actually haven’t! I keep thinking I should try it since I’ve heard how helpful it can be from all my EDS friends, but I don’t own any and have never gotten around to finding some. I have to admit, the cost is a huge barrier, but you writing in today might have convinced me to suck it up and give it a try once my finances settle a little more (in like a month or two?)

Thanks for reaching out and sharing!

[i-need-that-seat]

I've been lurking for quite a while and there's something I think you need to know: this blog is awesome and helps me get through the day/my life. Thank you, thank you, thank you.

You have no idea how badly I needed a message like this today!! Thank YOU so much for being so kind. I’m so glad to hear that this blog has been helpful to you. Kisses!!

[i-need-that-seat]

Abled people dont understand how it feels to need to live up to impossible standards set by not only society but yourself. Do I push myself to the point of pain? Sure do. But its because I've been told my whole life my level of activity is not acceptable and to do more. Abled people do not understand feeling chronically defective. So that anon can take a hike.

Thank you for sending this - no one can fully understand until they experience it, and even then, everyone’s body and experience and limits are different.

[i-need-that-seat]

Gosh I'm so sorry people (that anon) are like this. Personally, there's nothing I want more than to be able to go out looking 'normal'. Feeling 'normal'. If I at all feel like maybe I could get through the day with out all my braces, or mobility aids, or anything, I absolutely will even though I know I will regret it later. Those few fleeting moments of freedom are what keep me going. An idiotic hope that one day it will all just go away. Chronic illness always manages to suck the joy away

Thank you so much for sending this. It helps to know that others out there get that feeling of craving normalcy, even to the detriment of our bodies.

[i-need-that-seat]

You felt it moving and didn't stop? Yea sounds like a you problem.

Wow, you trying to make a disabled girl cry this morning? Because it worked, you fucking asshole.

I’m never gonna understand why people send messages like this. I’m clearly already feeling terrible. And if you don’t have a chronic illness, you’re never going to understand that stubborn need to push yourself because all you want is to feel normal. So get the hell away from my blog.