#EhlersDrama - the bad kind

Dear Cedars-Sinai:

I am writing this as an open letter to your staff and as a PSA, either definition.

Someone I care about, who does have a legitimate diagnosis of Ehlers-Danlos Syndrome, showed up at your hospital and behaved very very badly recently. #EhlersDrama

I was dragged into this from her own social media posting, claiming she was in your hospital, dying from negligent care, trying to drag high profile people into it. I believed it.

For about 36 hours, I was extremelllllllly upset for her because I do care. We lost a local zebra last year, and I couldn’t stand the thought of losing another.

You can TOTALLY BE DYING from an Ehlers-Danlos complication, be in a hospital, and have no one believe you. Especially if you have Vascular Ehlers-Danlos. Most doctors don’t know the difference between hEDS and vEDS, or how life-threatening vEDS is, so lives are lost.

This person who I am discussing has hEDS and was not in medical trouble but having a drug-seeking, attention-seeking meltdown. Also abusing and exploiting and humiliating Cedars staff. And begging for her GoFundMe. All on social media 🤦‍♀️ .

As you know, this is a time when we all should be saving our stress for coping with our own lives. Since the Orange-in-Chief did not take steps to prepare our health care system when China notified the World Health Organization um, we have a problem in January . . .

Looks like the game show host still won’t do his job . . .

Because he continues to undermine, cause conflict and create cognitive dissonance (confuse people so much they suspend critical analysis and just go along with it) by making grandiose unrealistic claims that contradict health officials . . .

Which is how to control people and get fervent adoration . . .

As cult leaders do. They are always mentally ill malignant narcissists.

If this one had gotten prepared, the shutdown of society could have been prevented.

• If medical personal had protective gear

• If hospitals had been supplied up

• If coronavirus tests had been ready to give everyone

You and I might be at work right now.

It could have happened. It was his job. But not with Orange-In-Chief.

As I type this he’s refusing to order and coordinate the mass production of ventilators. Because he likes to be begged, to feel important, to dangle life and death over the rest of us. The only conversation can be about him-him-him.

I feel like we’re on our own 🤯 . It’s scary.

So it’s worth reminding everyone who EDSers really are.

Losing your sh*t is totally normal for Ehlers-Danlos drama. We are very sick people with crushing symptoms, most of which are impossible to measure or even correctly describe. Life with EDS can be horrible overwhelming torture.

But let’s not be attacking healthcare workers, who may be the most valuable members of our society even when not a time of national crisis.

In Berlin, Germany, in this world besieged by Covid-19, everyone stands on their balcony and applauds the healthcare workers every day. In Paris, too.👏👏👏👏

But #EhlersDrama that is the subject of this post, what this person did like literally makes my life worse.

Guess who sees doctors at Cedars-Sinai?

Guess who goes to that hospital?

ME! 

MANY OF MY LOCAL EDS FRIENDS!

Those traumatized healthcare providers will remember Ehlers-Danlos, for all the wrong reasons.

We with EDS are going to have a harder time getting taken seriously at Cedars-Sinai next time we are there. And for a long time after.

And who knows what those hospital staff will tell others about us. Dear god . . . EDsers get accused of having Factitious Disorder because our disease is so difficult to quantify, and we are so sick, yet so pretty.

I do my best to be as polite as I can to medical staff, even if I’m losing my sh*t. You can too.

It’s always okay to apologize graciously. People love it.

This is going to be a difficult time for drug addicts everywhere, but there will be lots of opportunities for drama addicts.

After 9/11, there were people who pretended they had lost somebody that day, and went on doing it for years, for the sympathy and also financial benefit. Sigh.

Human nature.

If you want to stay my friend, do not do things that are going to make my survival harder.

Do not make the world a more difficult place for anyone with EDS.

I won’t like ya if you do.

Thanks.

I’d also like a badge for all the Facebook groups I’ve been kicked out of over the years.

Being popular? Liked? Always been meh to me.

I’d rather be strong, just say what I think.  

Now . . .

I’m going to metabolize out my stress hormones by walking the neighborhood with weights on, which I do everyday so I don’t lose my f*cking mind. Also do TRX and kettlebells at home.

Every day is a day to get stronger.

Thank you to all the doctors, nurses, physical therapists, phlebotomists, hospitals, drug manufacturers and health care workers who have made my quality of life possible. Wouldn’t be out there posting all these obnoxious selfies without ya. 😘😘😘😘😘😘😘

I’d also like to apologize to the Ehlers-Danlos Society, which is doing an excellent excellent job researching our disease, promoting awareness and keeping us informed.

Stay safe. ❤️❤️❤️❤️

We’re going to get through this.❤️❤️❤️❤️

XO - M.