Maybe you can afford to wait. Maybe for you there’s a tomorrow. Maybe for you there’s one thousand tomorrows, or three thousand, or ten, so much time you can bathe in it, roll around it, let it slide like coins through your fingers. So much time you can waste it. But for some of us there’s only today. And the truth is, you never really know.
When your rib suddenly subluxes in a public setting.
That is actually when I feel the most like Miley Cyrus.
(May is Ehlers Danlos Syndrome awareness month.)
Characteristics of an emotionally abusive relationship include:
· Using money as a means of control
· Threatening to walk out or abandon you
· Creating fear and anxiety through looks, words, threats and actions
· Destroying things (and…
Ten years ago today, I sat in a small windowless office while a doctor told me that I had something called Ehlers-Danlos Syndrome and I’d probably be dead within five years.
I had no clue what it was or what he’d said. I was so overwhelmed that a friend did the initial researching and sent me links. At the time, there was very little information online. The EDNF had an impenetrable web page, there was no NYC support group, and I was only able to find a few people with livejournals. So I signed up for LJ and started connecting.
It’s so different now, you guys. I’ve met so many Ehlers Danlos patients now that I can pick ‘em out by sight. Twitter, Tumblr, MF’in LJ - We’re EVERYWHERE. We’ve got forums and multiple foundations. It’s kind of awesome. I learn so much every day.
I remember reading that most doctors would be lucky to see one patient with EDS during their entire practice. I’ve been mistreated by more doctors than those who’ve helped. It’s been a good learning experience, but I’m glad it’s getting better. We’re still not there, not by a long shot, but it’s a little better.
May is Ehlers-Danlos Awareness month, which meant fuck-all to me when I started hearing about it, around 2006. It was a stressor on the local groups to try and earn money and gain some local media support for the national foundation. I don’t feel that way about it anymore. When I tell people about EDS and the way it affects my life on a daily basis,my life gets better. It helps other people get diagnosed and treated. When I recommend doctors who have been helpful, they see more EDS patients and end up treating me more effectively. The people around me gain a slightly better understanding of my limitations and prioritize accessibility.
It’s better now than it was 10 years ago, but there’s still a long way to go.
If you want to know more about Ehlers-Danlos Syndrome, start here:
Foundations & Support: EDNF Ehlers Danlos Network Cares EDSNYC 2.0**The people in the NYC group made me feel like I was going to get through this. I cannot stress enough how much in-person support has helped.
If you’re down with reblogging for awareness, go for it. I’ll post other EDS things today and this month, too. Thanks for reading.
[Text Reads: “Badass Chronic Pain Tips / Society wants to make you believe that mobility aids are associated with weakness, but what all those ableist fucks who say shit that makes you feel like crap don’t realize is that you’re one hardcore, pissed-off cripple who is already at their maximum capacity of dealing with daily ableist bullshit—with a built-in blunt force weapon or mechanism to run them the fuck over with.”]
You don’t need to take their bullshit. Beat up ableists with your cane.
My walker is killer. Never mind my fist o’ ring splints.
TW: Sexual abuseElizabeth Smart became a household name after she was kidnapped from her home in Salt Lake City, UT at the age of 14 and held in captivity for nine months. She was forced into a polygamous marriage, tethered to a metal cable, and raped daily until she was rescued from her captors nine months later. Smart was recovered while she and her kidnappers were walking down a suburban street, leading many Americans who followed her story on the national news to wonder:Why didn’t she just run away as soon as she was brought outside?
Speaking to an audience at Johns Hopkins about issues of human trafficking and sexual violence, Smart recently offered an answer to that question. She explained that some human trafficking victims don’t run away because they feel worthless after being raped, particularly if they have been raised in conservative cultures that push abstinence-only education and emphasize sexual purity:
Smart said she “felt so dirty and so filthy” after she was raped by her captor, and she understands why someone wouldn’t run “because of that alone.”
Smart spoke at a Johns Hopkins human trafficking forum, saying she was raised in a religious household and recalled a school teacher who spoke once about abstinence and compared sex to chewing gum.
“I thought, ‘Oh, my gosh, I’m that chewed up piece of gum, nobody re-chews a piece of gum, you throw it away.’ And that’s how easy it is to feel like you know longer have worth, you know longer have value,” Smart said. “Why would it even be worth screaming out? Why would it even make a difference if you are rescued? Your life still has no value.”
Now in her mid-twenties, Smart runs a foundation to help educate children about sexual crimes. She now believes that children should grow up learning that “you will always have value and nothing can change that.”
Social psychologists and sexual abuse counselors agree that comprehensive sex education can help prevent sexual crimes. Teaching children about their bodies gives them the tools to describe acts of abuse without feeling as embarrassed or uncomfortable, and it also helps elevate their self-confidence and sense of bodily autonomy. A shame-based approach to genitalia and sexuality, on the other hand, sends kids the message that they can’t discuss or ask questions about any of those issues.
Everybody around you is struggling with not living up to their own expectations in some way, especially the people who seem the happiest and most successful. It’s not the same struggle, but they’re struggling nonetheless. That’s the only real “normal”.
May is Ehlers-Danlos Awareness Month. Spread the word.
We got mad tricks, yo.
(Here, lemme get you an ice pack)
The only people who understand how hard it is to be young, and chronically ill, are YOUNG AND CHRONICALLY ILL. Older middle-aged people who become ill, have experienced life. They have experienced their prime. They have had the opportunity to…
Not really though, because there is this thing called time which propels us forward regardless of our ability status. I remember, very very well in fact, what it was like to be young and sick. They call it chronically ill for a reason. This shit does not pass. It changes, but it doesn’t just get up and run off one day. It suuuuuuucks.
But guys! Get this: when you get to your late twenties all of your able bodied friends will be freaking out about having their dreams seemingly evaporate** and you will be sitting on the sofa going “yup, I remember this”. By that point, you will have adjusted. You will have had some good days and some terrible ones and some where it truly seemed like you might actually kick it this time, but there will also be moments so big and cool you can’t believe you’re not watching it on screen. You’ll have a new set of dreams for yourself. There are going to be horrible personal medical dramas and obstacles, but you’ll know that you’re not alone in feeling like this. It’ll get better, even when you don’t.
Every time there’s something new and scary on my chart, I feel young and sick. It’s the terror of unstoppable change. Until someone actually throws me in a Tardis, I’ve got to adjust.
**edited to add: For clarification, I don’t think everybody experiences what we experience. Nor do I think everybody’s dreams go away or that (able-bodied or otherwise) people don’t achieve incredible things. I do believe that nobody actually experiences life in their prime, which is to say we don’t know what that is, but in our minds it’s usually gone or somewhere off in the distant future. Our “prime” is an abstract, highly subjective concept. You’re the only one who can judge it, and it will always shift.
(Source: , via chronically-something)