Sean H.

The problem with this last line is the fact that it means doctors tend to try and figure these things out based on their perceptions of our character, rather than our pain, and this leads to a lot of people being discounted and dismissed as exaggerating our outright lying about their pain.

Pain is a very common symptom in many illnesses, too, because it is our body's way of signaling something is wrong, and the medical system is meant to translate the signals of our body into the information they need for diagnostics and treatment. They are, however, extremely fallible and don't always have the best of intentions.

I'll get into more on sources of Chronic Pain in another section of this.

Chronic Pain can be relieved, eased, and maybe even entirely calmed for a time. You may have long windows between feeling that pain, either due to treatment, your own measures in your day to day life, coping mechanisms (we'll address this in a later section, too), or just the nature of your pain. The severity or frequency of your pain is not relevant to whether or not that pain is Chronic, so long as the source of the pain remains. You can have long-term pain that does not become chronic, so keep that in mind. Typically, that would be things like recovering from a surgery/injury or something else that has lead to long, painful circumstances.

Chronic pain can happen in a vast number of ways. Some of the main ways are through genetic/acquired health issues, such as Fibromyalgia, which is a common thing associated with the idea of Chronic Pain, or through injuries/physical trauma that wasn't treated appropriately during the acute phase.

We've found out that neural pathways are much like muscles, in that the more that you use them, the stronger they get, especially when you're younger. This is why we say things like, languages are easier to learn when you're a kid than when you're older, but your neural pathways are still quite flexible as you get older, and they never really stop shifting. Things like CPTSD physically change the makeup of your brain, because it is consistently exercising certain pathways. Why do I bring up something like CPTSD when we're discussing Chronic Pain? Because it makes a very salient point: Flashbacks and similar functions of CPTSD are similar to the mechanisms of Chronic Pain forming from Acute Pain.

If you spend long enough with Acute Pain that isn't treated well, those particular pathways get strengthened. It makes sense, if you think on it, that the pathways we use most would become more efficient, so that it uses less resources to activate them quickly. After all, it is a thing that keeps us alive and safe! So the more that your body is sending those same signals, the less input it takes for that signal to send. It can lead to that area being "tender" (having a much lower threshold for pain signals) or having pain signals send off with no active input at all. This is also part of why injuries that lead to Chronic Pain are also often "weather sensitive," because the change in barometric pressure is noticeable through that pain. This is why a lot of your Disabled friends know if the weather is going to change.

Now, with things like Fibromyalgia, we know that the nerves are sending off signals they aren't supposed to, sending off the wrong signals for certain inputs, and not sending off some of the signals its supposed to. It can be any number of different arrangements of these, depending on the source of Chronic Pain. Some are mechanical, like Arthritis pain, where inflammation is compressing the nerves or causing damage to the area itself. This is where we tend to see the divide for Nerve Pain as a specific category of pain, and as someone who has nerve pain and musculoskeletal pain? Nerve pain is a whole other beast, and it is much harder to soothe, and generally, very expensive to boot. We have a better sense of musculoskeletal pain because it's "provable" and "measurable," ie. you don't necessarily need to just trust the patient's word that they're in pain, so... Yeah.

I'll use myself as an example here. If I know that the pain is something that I can account for in my health already, rather than new? I can pack that away, shove the pain into the back of my mind, and continue functioning. It's certainly not healthy by any stretch of the imagination, but that was never the question. The types of injuries, illnesses, and pains I've gone through over the years, where I've been able to pick myself back up and just keep going literally because I didn't have an option is... Staggering. Once should be enough. But dozens upon dozens of times should say something about what it's like to live with Chronic Pain. We're rarely medicated appropriately, in part because doctors aren't fond of putting someone on 24/7 pain relief, and tolerances build, etc ableism being the core of that.

There's an irony in the fact that this post, up to this point, has been in my drafts for a couple months. Disability Pride Month seems like a good time to actually finish this.

Sometimes, I can tell I'm in pain, but it doesn't register like pain, exactly. It's more like my body just stiffens around that area and goes "You're not moving this, I know you're gonna be reckless about it." My body is right about that, in fairness. There's also the fact that because I'm constantly in pain, my idea of pain severity is completely messed up. I live at 7-8/10 pain, and part of my brain goes "That means that's your 0." But that also doesn't make sense. Then my brain goes "You 10/10 is a moving goalpost, because your chronic pain gets worse over time" and I'm like "Right... That's why the worst pain I'd ever been in 10 years ago feels like when I move wrong now." This isn't universal but it's also not uncommon.

When they found out I'd had Lyme disease, they immediately started looking into how to lower my baseline pain, and I actually told them "Oh, it's ok, I manage it alright with the cannabis." I legitimately looked at them and said "Less pain? I dunno about that" because I'm that used to being in so much pain that most people would either blackout, go into shock, or beg for mercy. "That sounds dramatic, Cosmo, how could you know something like that?" Because it's what my brain wants to do a lot of the time.

The amount of control you have to develop is unreal. Because you have to learn how to tell your brain to shut the hell up about the signals it is sending you, you have to tell it "Yes I know the thing hurts but I do not have a choice right now, I have to move it." Doctors get confused because I sit like a rock whenever they're poking, prodding, moving, etc trying to get the pain to happen. The only thing they have is me saying "Yep, that hurts." This causes problems but it also just kinda terrifies doctors. I also have to death grip my brain to maintain lucidity and coherence so I can tell the doctors what's happening, and list off medications, and medical history, and all the little nuances of my existence. I can't miss a detail, or fuck up a number/name. It is life or death. This means I very rarely look/sound like I'm in the level of pain I'm in, and most folks can't tell unless they're very close to me, usually they have to live with me a while. It's in the way I breathe, the speed or caution of my movement, the things I do or don't do that day, etc. That's it. It's the tiny cues that most would never catch.

I'm in extreme pain at this very moment, actually. My hip and my knee have decided they would like to be liberated, my spine is reminding me that it exists, my hands feel so stiff it's like they've been frozen. Yet, I'm sitting in my chair, at my desk, typing this. I hope this helps to explain why we're so often dismissed or not believed. The pain of me breaking a bone is very different than the chronic pain I have from that bone break after it has healed. When Chronic Pain Patients tell you our pain is different, it is not because we think it's different, it's because unlike those without Chronic Pain, we have experienced both Chronic and Acute pain, and we know the differences. In fact, it's crucial for us to know the difference, because acute pain signals a problem. Yes, we frequently have situations where we don't address acute pain until it becomes very severe, because we are so used to pain. We also tend to avoid emergency rooms because we're often labeled "drug seekers" because of the times we're not sure if something we're feeling is an emergency, and we of course, always have pain to rate.