I've seen this before, but it's been years and it just came across my Twitter in its dying days. The words are from a favorite author of mine, Maggie Stiefvater, and they are the words I most need to hear when it comes to dealing with chronic pain and illness. I didn't need this the first time I saw it, six years ago. I need it now. Maybe you do, too.
Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070
Me having a nice epsom salt bath after cramming my face with drugs that are barely managing my pain
Right now, the grey matter right behind your forehead is calculating whether you should feel pleasantly content, or an irritating degree of contempt. If you also happen to experience chronic pain, one emotion will probably be more likely than the other.
New research shows how pain affects the way our prefrontal lobe processes emotion at a fundamental level, finding tendencies to be more anxious or depressed are the result of disruptions to the way cells communicate.
“Chronic pain is more than an awful sensation,” says Sylvia Gustin, a neuroscientist and psychologist at the University of New South Wales and NeuRA, a neurological research institute in Australia.
“It can affect our feelings, beliefs and the way we are.”
Oh look, it's me.
More people need to understand this. My hips & knees are in constant stabbing pain. Unless I physically cannot put weight on them, I will still be doing stuff because life continues & shit needs to get done.
Actually, realistically, even if my leg won't bear weight, I find a way around it to get shit done.
This is part of why I think most pain scales are absurd. I found one at my pain management office that doesn't base the rating on physical activity, but on how much it invades your thoughts. They understand that I (and a lot of chronic pain patients) can physically function with high pain levels because we have to.
So the question for the scale becomes, is the pain just background noise? Does it intrude into active thoughts? Is the intrusion only when you do certain stuff, at random times, or constantly? Is it making it harder to focus than normal? Making it a bit tough to articulate in conversations? Is it overwhelming all other thoughts?
These are the types of questions that should be asked when dealing with a chronic pain patient in any setting. Doctors, nurses, and emergency room staff should be taught this & adjust their line of questioning if dealing with a patient who has a chronic pain condition.
Additionally, it should be specified as to if they are questioning a specific or new pain or if they are questioning overall day to day pain. If I go into my doctor with a migraine, obviously my answers will be specifically about the migraine. When I go to my monthly pain appointment, we are talking about my condition over the last month and then specifically my condition that day.
When you have sustained high levels of pain, you develop coping skills to deal with it because it's unacceptable to just lay down crying all the time. This is also poorly understood.
Example: I went to the ER because I had suspected that a fall had resulted in some sort of fracture or tear in my hip. It was more swollen than a fall usually caused, was discolored, & while I could put a bit of weight on it while heavily leaning on my cane, doing so for more than 5 minutes made me vomit. I was told that wasn't possible because if it was broken at all or even slightly out of place, I'd be sobbing & not putting any weight on it. I reminded them that I have vEDS with very unstable hips & that I'd broken every bone in the top of my foot multiple times without even knowing until I came in because of swelling, walking on it for a day or two beforehand. They looked skeptical. So I slid my other hip & my shoulder out of socket, ever so slightly but still noticeably. They still looked skeptical but said they'd do xrays.
Later a different nurse came in & asked how I managed a small hip fracture at my age. She remarked upon how well I handled the pain & asked if I had a chronic issue. I explained & she nodded, saying "yep. That'll do it."
We need more education about chronic pain. The impact it has on our bodies, our ability to cope, our ability to function, and our cognitive health/function. More studies need to be done about the short term and long term impact. Because having been in some level of pain for as long as I can remember, I assure you that there certainly is an impact. (RIP my photographic memory)
“I don’t really know why. I think it happens a lot with [chronically ill] people that you just kind of like to go “I’m fine. I’m fine. Yes I can do this.” And just, then go home and cry”
— On hiding their illness, from the Invisible Not Broken Podcast
July 5th is worldwide Cluster Headache* Survivor Day, a day to celebrate courage, strength, empathy, and hope.
0 out of 5 stars. Would not recommend. Doesn't work as advertised. Always hurts. No one can do anything. It won't stop. Constantly malfunctions and glitches. Manufacturer won't refund or replace.
I don’t have chronic pain but this artwork is so nice to look at *^*
Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.
This also works pretty well for numerous mental disabilities, or just generally for any “invisible” disabilities.
There seems to be an overwhelming idea that if you have an ongoing debilitating pain disorder, that there is an obligation to somehow fight on despite it. I have fibromyalgia and it simply doesn’t work like that. If you push yourself harder than your body feels capable there is a knock on effect that can leave you unable to get out of bed for days. I believe that this ‘fight’ exists in the lexicon because of the pressure applied by non chronic pain sufferers to justify an invisible illness. There seems to be some expectation that you should prove to them that you have undertaken some Herculean effort to justify your exhaustion, pain and inability to ‘do’.
Well I say don’t do it. If non sufferers want an opinion on it, it is their responsibility to educate themselves, not yours to satisfy their sense of entitlement.
Cluster headache is a condition that involves, as its most prominent feature, an immense degree of pain that is almost always on only one side of the head. Some doctors and scientists have described the pain resulting from cluster headaches as the most intense pain a human can endure — worse than burns, broken bones or child birth.
i just want to remind people that if you try to tell someone that any physical pain that happened to you hurt worse than them, especially if they said cluster headache and you just shrug and say that headaches are nothing, remember this.
read this article about why you’re wrong about cluster headaches not being a big deal.
