Nobody has meant it as a condescending thing thus far. From the outside looking in, they see someone that goes through their life in considerable pain yet you’d never know from looking at her. They hear my story, and automatically picture themselves in it, while relating what smaller influences have brought their lives to a screeching halt. I can see where it can seem like a super power.

She’s walked on a dislocated hip…
Worked through a migraine…
Got an stent removed from inside her ankle during an office visit…
IT’S EDS-WOMAN!!!

However, I don’t have a naturally high tolerance for pain. I adapted out of necessity. It’s not a pretty story, and I seriously wouldn’t wish that journey on anyone. Personally, it’s not a question of being brave or strong. It was simply what I needed to do in order to survive.

There is not a day that I am pain free, so much so I had a full blown panic attack when I was on dilauded after my first ankle surgery. Why did I panic? Because taking an extra pill made the pain go away. My brain had no idea how to handle not feeling pain, so it freaked out and screamed that I must be dying because it couldn’t feel things. It was not a fun time. I’ve been told I’m a trip on anesthesia and during a migraine. Give me meds that take pain away though…and I’m Chicken Little and everything is about to end. The same happened on nitrous oxide at the dentist. The pain was there but distant and…my brain freaked out and it screamed that we were dying. Then it decided to panic and run through a mental checklist of things I could do. Could I blink, could I swallow, could I breathe, could I move my fingers, could I move my toes? All because the pain wasn’t in the forefront where my brain thought it needed to be. My brain is obviously a masochist at heart.

Now, my daily pain varies from a general body ache in most of my joints to a highly significant pain that is nearly overwhelming. It doesn’t happen to a pattern or stick to a schedule, so I wake up not knowing what the day will bring. But, I always have something to do. A job to go to. Chores to try to keep up with. Pets that need attending. Life doesn’t stop because I’m in pain. My snakes don’t care if I have a rib out when it’s feeding day. Things need done, and the world waits for no one. At least…that’s what I told myself. Over the past few years, I’ve been forced into a situation where I need to learn to listen to the pain signals if I don’t want to push myself straight into a wheelchair. But I started pushing when I was very young, so it’s a hard habit to unlearn.

I was told often, that my pain wasn’t real enough for me to be inhibited by it. Doctors, teachers, family, friends. It was always said that I was just a weak girl that needed to get outside and exercise. I was a drama queen for saying normal activities hurt. Girls just need to learn that discomfort isn’t the pain they make it out to be.

My response to all of that wasn’t to get angry, it was to internalize it and believe that I really was weaker than most around me. After all, I could never do a pull up or a push up. Running hurt. I had trouble gripping things sometimes. I could bend weird but I still couldn’t even do a split. I even wanted to cry because my hands hurt bad when the weather turned cold. But nobody else my age seemed to be impacted as badly as I was. My little kid brain, took it as I truly was the weak little girl that they told me I was.

I wanted to prove that I could be strong, that I could learn to be better, be like all the other kids. So I tried to participate, even though my ankles rolled all the time. I’d keep going even though it felt like my spine was on fire. If everyone else could do it…I was going to try and prove I could too. I didn’t know that the people I was trying to measure up to, never felt the pain that I was in. Nobody told me that my muscles were actually pretty impressive however my ligaments came from Gumby and that’s probably where my pain originated. Nobody bothered to tell me that I was comparing myself on an unfair scale. Nobody bothered to even look at it in the first place. So I persisted.

So many people say things about how they could never accomplish what I have. Perhaps I’m a little bit jaded, but I can’t help but be slightly insulted sometimes. To me, it was never presented as an option to give up or to live on pain meds. It was being thrown in the deep end of a turbulent pool and told to simply learn to swim because all the other kids your age have. If you aren’t told that the other kids learned in the shallow end of calm waters, you assume you’re flawed if you can’t accomplish the same. It had nothing to do with being brave and on a noble quest to overcome and everything to do with just trying to be a normal kid, and later, a normal person. And spite. I’m definitely motivated partially by pure spite.

Yes, I can go to work with a migraine and function pretty well. I can act fairly normal when I’ve got a joint out of place. I’m willing to sit through procedures that hurt if that’s what it takes. But at what cost did I get to that point? I can’t say that I’d take it back, or I wish things were different. I can’t imagine going through life any differently. If having EDS means that I’ve got a life of pain, it works out in my favor half the time to be able to ignore it. Try and remember that it also comes with not being able to easily recognize that something serious is going on. The confusion of not knowing whether you should bother your doctor to see if an injury is worth medical attention. Doctors that are unwilling to help you because if you were really in pain, you wouldn’t be able to calmly discuss it. All because your brain has just accepted that significant pain is normal, so meh. Whatever.. Not to mention that when friends come to you with a painful experience, you come across as cold and unfeeling if you’re not careful. “You dislocated your finger? Okay…but…why are you freaking out about it. Just breathe. What do you mean you need help getting dressed? I don’t understand, it’s just one finger, all your others are fine…” And there’s always the really morbid sense of humor that can throw people. Nothing like casually suggesting someone take a chopsaw to your ankle to get most people in a room to look at you in horror.

I have no real concept of what normal life is like aside from an understanding that what I experience is probably different. I’ve had my surgeon tell me how well I’ve handled procedures they’ve done in the office with only some lidocaine. Yet I’m sitting here livid at my system for going into shock when I’m consciously alright from it. I’ve been told I’m weak so often and for so long, I honestly thought it was meant in a patronizing way the first time they said it. It never crossed my mind that the way I go through things was actually impressive.

Let that sink in for a minute. The trauma I’ve experienced is enough for my body to go into shock. But I’m so used to it that my brain doesn’t get swept up in it all the way. You’re not really supposed to be in a mental state to be annoyed at shock response to trauma. How much trauma do you think it takes to get to the point where the brain normalizes it to that point? To be sitting there, pale, shaking, nauseated, sweating, light headed, and to also be annoyed that you have to sit back because your body is freaking out over what you perceive to be “a little pain”. Fighting with yourself and trying to will your body into functioning. There’s been more than one occasion where someone asked if I was okay, and I replied in an emotionless voice, “Yeah, just shock response”

So while my high pain tolerance has been something that has helped me to survive and work past some of the hurdles in my life. I hope you are never in a situation where you body is put in the position where it has to do that to survive. My heart goes out to all those that have had to learn it, whether from something like EDS or another form of extended trauma. I know it can feel isolating, and there was a previous post that touched on some aspects of that as well. I know it can feel like you’re less human sometimes. It may not be traditional heartbreak from a lover, but it can sure feel like a part of you has been ripped out anyway. We may seem super human, or maybe less human, but really…we’re really just more broken than most and a bit on the numb side.