Dealing with our Anger
In early 2017, the new nosology for The Ehlers Danlos Syndromes was released and caused quite a lot of controversy... and anger. This post was written at that time in response to the overt anger & rage in the EDS community.-----
Anger. There is often a lot of it floating around the interwebs these days, especially in our EDS community.
Let me say this: Our anger is OK. Our anger is allowed. Our anger is most likely not unjustified.
But this is a moment that is defining our community, and unfortunately, instead of it being about the steps being taken to move us forward, it has become about the bitterness; it has become about blame.
It's making me sad to see our community crumble.
Our anger is OK, it is allowed, but it is not OK to take it out on people who are leading the troops forward; the people who have put their heart and soul into doing what no others have done in the last 20 years. These people are not the enemy; they are "us". They are members of our very own community. They do not deserve our anger. They do not deserve our abuse.
You and I are completely entitled to feel whatever it is that we feel right now. It is absolutely OK to feel.
It is not, however, OK to lash out at others. It is not OK to take out the anger that we have been harbouring for our whole symptomatic lives, and unleash it at the very people who are trying to help us.
I can see that people are feeling angry, confused, frustrated, unheard, disappointed…. and a whole gamut of other emotions. All of those things are OK. They need to be acknowledged, and expressed…. but that needs to happen in a way that is appropriate. My gut feeling on this, as someone with Hypermobile EDS, is that we are taking out the anger we have been holding onto for a long time and aiming it at an easy target.
The new nosology was bound to bring up lots of emotions; that’s OK, it’s completely normal and expected. However, the new nosology, and those who are sharing documents with us, or even writing documents about the new nosology, are not who we are angry with.
We are angry with our genes.
We are angry with whatever/whoever created us and gave us these defective genes.
I know when I get angry about it, I get angry with The Universe. You might be angry with God. You might be angry with The Creator. You might be angry at science, and the lack of advancement in the identification of the genetic marker for Hypermobile EDS. You might be angry at governments for not committing more money to funding.
In my opinion, ALL ARE JUSTIFIED. (You might be angry at your parents/birth parents. It's OK to feel that way too, just know that they didn't will this to happen to you - it wasn't their choice, just as it wasn't yours. And it's not appropriate to take it out on them, as much as we want to sometimes).
WE are angry at the doctors who haven’t heard us; the medical professionals who have dismissed us; the systems that have failed us. We are angry because of what has happened to us. We are angry. And being angry is OK.
But do you know what?
I think we are taking the easy way out here. By aiming our anger at someone or an organisation, or each other, where we hope someone will take the bait and write (bite) back, we are taking the easy way out. It’s much easier to wrestle and argue with a person because we are far more likely to get a reply. They are far more likely to fight back.
It’s much harder to fight with The Universe / God / The Creator /*Insert your deity*/ Science / a lack of funding because last I checked, it was kind of hard to get a definitive answer back from any of them. But guess what? THAT is who/what we are angry with…. and that is who should be copping the brunt of our wrath.
Yell, scream, write/type horrible things in your journal; paint, draw. Do something constructive, not destructive. Get the anger out, and aim it at the true source. Aim it at whatever you believe is to blame for your genes.
Get angry about the unanswerable questions.
The uncertainty.
The unpredictability. Get angry about the pain, the unfairness, the embarrassment, the shame, the guilt, the fear.
Get angry about feeling invalidated, unheard, overlooked, disempowered, threatened, scared, anxious. Get angry about it, but aim that anger in the right direction. And if you have no other place to get it out, and you want to yell and scream (in writing) about how horrible things are and how unfair it all is…. then go for it. Absolutely freakin, go for it!!
Send it to this email address. Just know that you’re not going to get a reply. You’re not going to get someone fighting back. It might be read; it might not. That’s not the important part. The important part is that you have something to say, something to express, something that needs to get out of you and into the world. This inbox is your space.
Because you know what?
We are better than this. We are a community. We are united by a common thread - our defective DNA. Let’s not bite the hand that feeds us, otherwise one day, there will be no hands left and we will actually be fighting this battle alone.