It's EDS awareness month and I wanted to share a little video talking about EDS
EDS stands for Ehlers-Danlos Syndrome
Which is a connective tissue disorder and it results in a boat load of problems for your body
Basically all of your joints fall out of socket pretty much all the time
And you're in chronic pain as a result of this morning, noon, and night and it really fucks up your life
There is no escaping it
There are a few things you can do that can help with it
So you could take some pain medicine or you could do some ice packs
You could do some wraps or you could do some dietary changes
But there's nothing you could actually do that would change your genetics
You are born with it, and you will have it forever
A problem also, is that it's a pretty rare condition
And a lot of people dont' know about it and also a lot of doctors don't know about it
So people suffering from EDS often spend many years misdiagnosed
Until they finally find a doctor who understands their condition
Now, I don't have EDS myself, my wife Martina does
And she would be here filming this video as well but she's in Canada now, for a family emergency
I wanted to film a video before EDS month is up
And in some ways I think that, I, as her husband
Who is not actually suffering from EDS can talk about EDS
In a way that people actually suffering from it might not be able to say out loud
So those of you who are familiar with our channel, you've seen Martina in our other videos
You know how charming and how vibrant and how energetic and how wonderful she is
But for those of you who are watching our videos, you don't actually see every single moment of Martina's life
You don't see the days when she's wrapped up in ice
You don't see the days when she can't get out of bed
And you don't see the days in which she cries
And you won't see that side of Martina
You shouldn't
Making these videos are one of the few things that genuinely make her happy
And help her keep her mind off her pain
Also in our videos, you don't see a lot of Martina's pain and you don't hear her talk about it because of the guilt
Guilt is the big thing I want to talk about today
Because one of the biggest symptoms that EDS patients might suffer from is an extreme sense of guilt
There's guilt in cancelling plans with your friends because she can't put on shoes that night
There's guilt in asking for help when she can't wash her hair in the shower
There's guilt in not being able to help her family out as much as they need
There's that guilt in having to burden people when she talks about her pain
This guilt weighs on her very very heavily
And that's why it's easier for me to make this video instead of her
But the point of this video isn't to make you feel bad for Martina
Because, probably, that will make her feel even more guilty
I've got two different points I want to make
Now, the first point of this video is to raise awareness of EDS because it's EDS awareness month
And I know for the vast majority of you, this is not going to be relevant
Because it's a very rare condition, a lot of you probably don't have it
And you probably don't even know someone who has it
But there are some of you who might have it
Some of you that might have it, that don't even know that you have it yet because you've been misdiagnosed for so long
So if you have any of the symptoms that I mentioned about Martina with her joints falling out regularly
Or if you're just curious about EDS please click on the link here
They give you a lot more information than I can give you in a short video
So that's point number one: Raising Awareness of EDS
The second point I want to make right now kind of goes back to Martina's sense of guilt
Martina's having a lot of difficulty climbing the stares lately
And she's also having a lot of difficulty standing on the Subway for a long period of time
So she has to use the elevator a lot more and she also has to sit in the spots for the elderly, disabled, or the pregnant
But it makes her feel terrible
Really really guilty whenever she has to use these things because she, herself, doesn't look disabled
She looks pretty young still and you can't see on her that she has a disability
So whenever she has to use an elevator or whenever she has to sit down in a disabled spot
She's wondering, well how many people are looking at her and thinking that she's a lazy American
Or just an asshole for taking the spot when somebody else should have it
And this is a major problem for people with invisible illnesses
And invisible illnesses aren't just EDS but there are other conditions like POTS or Fibromyalgia
I don't know how to pronounce that one but it's a scary one as well
There are lots of invisible illnesses in which people need to use these things
But you might not necessarily see it on their bodies outright
I sometimes see these justice videos online of other people yelling at some people for using
Handicap parking spots and screaming at them and saying that they're not disabled
When these people have no idea what that person might be going through on the inside
Just because you don't look like the handicap icon on the parking spots
Or you're not in a wheelchair doesn't necessarily mean that you're not disabled
So I'd advice, if you can, to keep that in mind
This is my second major point
If you feel the urge to scold somebody for using a handicap parking spot
Or for using disabled seating
You can actually do that person a lot more harm than good
Because if they're an asshole that's just using the spot because they want to
I doubt your yelling at them is going to cure them of their asshole--ishness
But if that person actually does need that spot and you ream them for it
You could scar them forever
The pay off matrix is not in your favor
You can do significantly more harm with this than you can do good
There are lots of people suffering in ways internally, that aren't manifested externally
So please don't give them shit about it
So that's it for my little video, thank you for watching
Martina actually flies back tomorrow and we can get back to making videos as soon as she's over her jet lag and feeling better
Thank you for watching, and happy EDS Awareness Month
Even though it's not really a happy thing to be aware of
But enjoy the rest of your month
Bye