To people who don’t understand chronic pain:
What a lot of people don’t understand about chronic pain is that it’s unrelenting. 24/7 365 days per year, we are in pain. Even when we’re smiling, even when we’re sleeping. There is no end. and that takes a physical and emotional toll.
Think about how frustrated you are when you stub your toe, or how miffed you get when you put hand sanitizer on a paper cut. Think about how you’re constantly aware of and irritated by a canker sore or a hang nail.
Now consider this: the amount of pain we are in on a daily basis would put you in the emergency room, no question. We have no concept of what a zero on the pain scale feels like anymore. We’re lucky if we get down to a 3, and even then, our 3 is your 6, and our 6 is your 9. We live our lives as functionally as possible in an amount of pain with which you would not be able to function.
A lot of the examples I used earlier are singular injuries, however most people who suffer from chronic pain suffer from multiple illnesses that all cause their own specific, constant pain. So imagine deep paper cuts on every finger, along with 5 canker sores in your mouth, 2 stubbed big toes, and 10 hangnails…. and you know none of them will ever heal.
You’d think you would get used to the pain but you never really do. You can get used to the idea of being in pain, and the idea of trying to function as best you can while in pain, but you never get used to the pain itself. Especially because the body likes to switch it up, so every day you wake up not knowing which of your conditions will cause the most pain. Some days the “hang nails” are more excruciating than the “stubbed toes,” and the next day the “paper cuts” make you want to crawl out of your skin.
I personally have multiple diagnoses that cause me pain. I have had a constant headache for the last 3 years. I have horrible nerve pain from the waist down that doesn’t respond to medication and oftentimes renders me unable to walk. I have Gastroparesis, which causes food to sit in my stomach for hours and hours on end, making me feel like I swallowed a boulder. I have joints that partially dislocate whenever they please. Thanks to EDS, oftentimes I will wake up with both of my hips partially dislocated and my muscles seized up so tightly around them that I am unable to put them back into place until my muscle relaxer kicks in, which can take hours. I have Endometriosis, a disease in which tissue similar to endometrium grows outside the uterus, and whenever I have a period I bleed internally. I have Autonomic Neuropathy and POTS, both of which contribute to my head and leg pain. I wake up every day not knowing which of these illnesses will cause me the most pain. None of these conditions will ever go away. This is my reality every minute of every day.
As I hope you can see, this is far beyond the paper cut analogy. It’s infuriating and exhausting, disheartening and stifling, agonizing and all-encompassing. Please keep this in mind and be patient with us.