EDS impacts my mental health in sooooo many ways.

Before I was diagnosed, when I thought my body functioned the way normal bodies do, the only way I knew how to describe my behavior was judgmentally. I must be really lazy, for not doing fitness activities, for not wanting to go out with people, for not wanting to cook dinner after a day at work. Or I must be a hypochondriac—imagining all these health problems that don’t show up on labs and imaging. Or maybe I’m just attention-seeking, and I complain about my body or go to the doctor to get attention (I have had doctors say that to me).

I also find it very hard to set boundaries in any context, and I can’t help but think this stems partly from having to push through pain and fatigue on a daily basis. I’ve developed this mental state I call “endurance mode”, where I just push through and try to tune out my body as much as possible, and focus on whatever I’m trying to get done. It’s a very useful skill, but I’ve used to so often and for so many years that I find it hard to not use it. Because I so rarely allow myself to say “no” when my body asks for it, I just find it hard to say “no” more generally.

And, I don’t feel like I have the luxury to stop using my endurance mode skill if I want to be able to pay my rent and buy food. In some ways it was easier before, when I was just judging myself and didn’t know any better. Now, I try to be kinder to myself and I see and feel the consequences of driving myself so hard, but I still have to do all of that to earn a living. It’s hard to keep on abusing my body with full awareness that I’m doing that. I’ve been trying to cultivate more two-way trust between my “body” and my “mind”. At first I thought it was that “I” don’t trust my “body” because I have these unstable joints, but I’ve since realized the much bigger breach of trust is the other way: my “body” doesn’t trust “me” to take care of it, and it has ample evidence to back up it’s claim over the past 48 years! So I’ve been working with the idea of “intuitive eating”, only about everything and not just food (https://www.intuitiveeating.org/10-principles-of-intuitive-eating/). This is where it’s hard to really honor my body, and to rest when it needs to rest.

I also have a lot of internalized ableism. Some part of me has totally bought into the capitalist idea that the only worth we have is our productivity. My idealistic mind wants to live in a world where all people are valued and nobody has to be monetarily productive to be worthy, but my capitalist-brainwashed mind recoils at the idea of going on disability.

I also have medical-related trauma. Because the local anesthesia used by dentists works unpredictably, I’ve had some pretty horrifying dental procedures. The lidocaine either doesn’t work at all, or it takes twice as much as they expect, takes longer to start working, and wears off in half the time. I could feel them cutting open my gums to remove my lower wisdom teeth, and I can often feel when they are drilling for fillings. I’ve had dentists start procedures before the lidocaine kicks in because they are visibly annoyed and tired of waiting, and I’ve had it wear off mid-procedure and they just keep working because they don’t believe me. I’ve also woken up twice during general anesthesia (my first two knee surgeries), and I generally have an intense trauma/panic reaction to tubes going down my throat, perhaps from emergency intubation. When I move my head in certain positions, I lose my airway, so laying on my back tends to make me feel a bit panicy, but the fear also seems justified since the airway is not optional!

It’s hard to know how much of this is treatable: is it actually anxiety when I have feelings of fear before the dentist? I’m fearing a real and likely scenario, not just catastrophizing about some worst case situation. There’s also just the “run of the mill” distrust/disease at seeing regular doctors, when I never know if they’re going to tell me I’m too fat (e.g., my fingers dislocating is 100% not about my weight, but thanks!), I’m just anxious, lonely, or just need to “join a basketball or volleyball team!”

There’s also a physiological layer to some of the so-called mental health things in EDS: we tend to be in “sympathetic overdrive”, one manifestation of dysautonomia and problems with the vagal nerve. “In particular, dysfunction of the autonomic nervous system can cause symptoms very suggestive of anxiety, panic, ADHD, and hypomania” (Jovin, 2020, p. 601)

There’s also a whole muddled layer in between: I will have multiple tiny “flight or flight” adrenaline surges on any given day, when I have a near-miss with a joint subluxing. And the possibility of something like that is always on my mind. Is that needless worry or realistic fear? Does worrying about my joints (a legitimate fear) accidentally create a “worrying habit” which then causes me to worry about stuff I don’t really need to worry about?

Fatigue plays a huge role in my mental health, as well. There are times I’m too tired to even watch tv, and my attitude definitely takes a huge dive when I’m that fatigued.

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