It’s been a long time, and frankly, I’m not entirely sure where to start with this…
I think you’ve all noticed the name change if you’re looking at this journal. If you missed the automatic announcement or you’re new, I formerly went by CJ and ParadoxPandox, and I was a small fennec fox and red panda mix. But nowadays, I’m a bear named Cooper, going by CoopBurrito online.
But that’s not… really why I’m here, and I think the title should tell you that.
It’s been a year and a half since I actually posted a story on this account. I haven’t had the energy to even write any of this, let alone have a traditional job, and that… always felt like an excuse. Something I just said to walk away from any duties or community when things got too hard. I mean… I had always been doing this throughout my life, hadn’t I? To me, it had always seemed like I was looking for any way to get out of what I had to do.
That’s what my parents told me as a kid, after all. Why would I question that?
This “energy” issue had always been a problem, but I had gotten convinced over the nearly three decades I’ve spent on this world that I was just lazy…
Lazy, as I juggled school, scouts, friends, and church shit… because every kid does all that and a whole lot more. I was just trying to sit in my room and eat food and play video games all day, right? I mean, I was addicted to them, wasn’t I?
Lazy, as I tried to go to college full-time while working part-time retail and part-time work study… because other people have full-time jobs while they’re in college and do just fine. I was just trying to get out of being a responsible adult. I just was trying to sit in my room and play video games all day, right? Even though I was barely playing them at the time…
Lazy, as I crashed out hard, trying desperately to pick up the pieces from a horrible breakup and ended up dropping out of college… because other people can go through that and just get back up. My physical energy wasn’t returning even as my emotional strength did, but… I was just trying to get out of my responsibilities. Maybe I needed to improve my diet. But no, I just wanted to sit in my room… and play video games all day, didn’t I? And yet I barely felt like holding a controller…
Even much later down the line, after moving away… Lazy, as I pulled shifts at Target with over twenty thousand steps, bringing in carts and walking around the store all day while exercising on my days off… because other people are able to do literally anything else after getting off work. I must’ve just been too fat, though… and trying to get out of my responsibilities as an adult. My back pain wasn’t even that bad. Now, as an adult, I was sitting there, blaming myself, telling myself I just wanted to sit at home and play games all day. Even though it was so hard to even find the energy…
My parents and I should’ve realized in the first place that these issues were partly because I’m autistic with somewhat high support needs, given I got diagnosed with what was then “Asperger’s syndrome” at three. I just couldn’t handle what a neurotypical society was thrusting onto me. And that is something I eventually came to realize… but even that really didn’t explain everything, as I’m learning now. It’s a lot more complicated than neurodivergence and “energy levels”.
For the past nearly twenty-nine and a half years, I have thought that it’s normal to feel near-constant physical pain. I know that might sound… absolutely absurd and unrealistic. How could I possibly go that long without knowing pain isn’t normal?
But you have to understand that I’ve been in pain virtually my entire life. That’s not hyperbole. Well, not completely, anyway. It probably isn’t exactly my whole lifespan that I’ve been in pain throughout, but it’s close. I remember being in pain as far back as kindergarten, and I realize now that was far from normal.
Whenever I would bring up my pain or tiredness, though… people didn’t take me seriously. My parents would so very quickly dismiss it by saying things like, “You’re a kid. You can’t be in that much pain.”
“You’re a kid. You can’t be that tired.”
So… I learned pain was normal. I learned being tired was normal. Those aren’t truths about the world, but I thought they were true. And that left me going through life as if all of this was how it was supposed to be, only rarely talking about the pain… only to be told that I was being dramatic or overreacting or that I was too young or anything like that, simply because I “seemed fine”. Even though I was in all this pain, I still had a “normal” range of motion, and it wasn’t always happening, so… it must not be real. Constantly invalidated, constantly told that’s not how things are… so I pushed through and stopped talking about the pain altogether.
I created a worldview I thought made sense: if people were going to the doctor for pain, then that meant there’s a threshold of pain at which you can be considered to actually be “in pain”. So in my mind, when the pain would get worse, that would be when it’s okay to finally say something. But I must have had no idea what that point was since I’m autistic, I thought.
That couldn’t have been further from the truth.
I’ve had joint and muscle pain almost since I can remember, and that’s… not normal. I know that now. I saw a video recently on YouTube titled EDS & Why We Misunderstand Disability from Ember Green, a YouTuber who does a lot of content on disability and autism. Right up my alley, seeing as I’m autistic and had worsening back pain, from my point of view then. I didn’t know what EDS was, but I was about to find out, and I’d have more info about things that could happen… or so I thought.
Imagine my surprise when she gives a ten-minute anecdote at the very start of the video explaining… basically my entire childhood. I was a bit distracted when I was watching the video, and I got a few minutes in before I heard, “I was always tired. Even as a child.”
All the info I had heard but hadn’t processed yet from the video came rushing in, and I had to restart the video to have a closer listen. I ended up staring at the TV in shock for those ten minutes as she explained everything. Nearly everything she talked about, save for the headaches, happened to me… and when she said she thought it was normal, that hurt like a knife right in the chest…
EDS stands for Ehlers-Danlos syndrome. Or really, syndromes, plural. It’s what I think I might have, and it’s a collection of thirteen different subtypes of afflictions mostly stemming from hypermobility in the joints due to abnormal collagen production, making all the tissue in the body have different properties, like skin being stretchy and soft. Because of the hypermobility, I can do things like bend my pinky back a whole lot, and I used to be able to do things like put my legs all the way behind my head… and I was also able to suck my tip for a while. That was fun. X3
But I think you can tell how much pain that would cause over time, hyperextending my joints and ligaments and thereby even my muscles, to an extent. And yet, I pushed through it. All of it… Day after day, week after week, month after month… Year after year… I put myself through hell because I thought that was normal. I thought everyone experienced all this pain all throughout their lives.
I was lied to for my whole life, and I’m… devastated. My whole world has been rocked by this. I’ve always been able to accept that people are being truthful about their pain, but I thought it was just an unspoken rule that we don’t talk about the “normal pain”. The baseline level of pain I thought existed, though, which I thought was a fundamental truth… was a fundamental lie.
To an extent, it almost doesn’t feel real. I have a part of me telling myself that I couldn’t have been wrong for that long. I am twenty-nine years old, and there’s no way I’ve misunderstood things for so long… but I have. And this is real. I haven’t been lazy or dramatic… I’ve been in legitimate and sometimes debilitating pain my whole life and never got any help or any sympathy.
Even my partners never knew… I never told them because I thought it was all normal. I only ever told them about my back pain, my foot pain after work, etc. I never told them about the pain I’ve always felt in all my joints… I never told them that there’s always something hurting on my body… I suffered for so long in silence because my parents chose not to believe me. All the things they’ve already done to me… and now that.
So now I’m just trying to pick up the pieces from this discovery. I’m trying to figure out what I need to do to move on from this and try to lead a less painful life. I’m not used to taking care of this pain. I’m used to just ignoring it. But now that I know things could get so much worse if I push myself, I have to take it easy and… try to rest. That exacerbates my feelings of thinking I’m lazy or inadequate… but I can’t justify pushing myself anymore. I can’t justify ignoring this pain that I think I was finally on the verge of accepting.
I’m not sure where I’ll go from here. I’m hoping to maybe get a diagnosis at some point when/if we can afford it, whether it’s of EDS or something else that will help explain everything, but other than that… I’m just not sure. I’ll take the position I’ve been taking for a while that I have no clue when I’ll return fully, if I ever will, but this… gives me a path forward, however dimly lit.
TL;DR: If you didn’t want to read nearly two thousand words, here’s the gist of it: I might have a connective tissue problem that has caused me major pain and fatigue for most of my life, and I was gaslit by my parents and other adults in my life that it was normal. Because apparently, it’s a good thing to teach your kids that they deserve to be in pain! And now my entire worldview got shattered, and I’m trying to figure out how I move forward now that I know I can.
Thanks for taking the time to read through all this (or at least read the TL;DR). It means a lot. I hope everyone out there can figure out the problems in their life, like I’m trying to deal with mine, and that we don’t all go insane in the process. Stay safe… and be kind. Please, be kind. I’ve seen so much unkindness in my life, and I want it to stop.
I feel this, hard. Late-diagnosis or understanding of things that affected us really heavily at a late age is rough. I'm in my early thirties, and only realized that autism explains a lot. I thought it was just trauma.
Having a name for something, and an explanation, is both the most freeing thing and the most terrible yank, at least at first.
I hope this knowledge gives you some form of peace, if not now then in time, and helps you lead a better life.
I feel this, hard. Late-diagnosis or understanding of things that affected us really heavily at a l
