Wow. Yes. I wonder if this connects: I’ve been told that I exhibit abnormal pain response due to abnormalities in the Anterior Cingulate Cortex. The idea was I don’t get a social “hurt” signal from physical pain. I had to work very hard years ago to learn to pay attention to and respond to pain. What is so weird though is that I will physically feel the emotional pain of others. So, I don’t feel my own physical pain as emotional nor my own emotional pain as physical, but I experience outrageous physical pain from hostility and those who are suppressing with hostility big emotions of hurt. It’s… I feel like I exist to be physically tortured. I wish this was understood. I have decades of debilitating illness behind me and I am not sick when I can get away from hostility.
This so recognisable! When I got stitches after a bike accident the nurse asked if I meditated as I was so still during the procedure. When I miscarried he ER nurse acted as if I was exaggerating, told me 'If you breathe like that the pain will be worse' and left without explaining the right way to breathe and closed the door so she didn't have to hear me crying out. Then when I gave birth to my first son I was already in hospital for a week, I felt that I wanted to call my husband in and the nurse said maybe better to wait till the doctor has seen you. I called him anyway. Then I asked the nurse to go to the toilet and she called in the doc who came in saying "This will still take a while, no rush" Then he looked and said "I already see the hairs, let's move to the delivery room fast" . I always felt that this was just peculiar bad luck and it's really helpful to understand I'm not alone in these experiences
I am autistic and ADHD. I also have Hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndome, Gastroparesis, Mast Cell Activation Syndrome, fibromyalgia—you name it, I’ve got it. I spend my day to day in considerable pain. I wasn’t diagnosed with autism until this year, at 28. I have been disabled and in chronic pain since I was about 14. At this point, my pain scale is wildly different than what doctors expect. And to be honest, I have no concept of a body free of pain. It’s only this year that someone informed me that something I was classifying as discomfort was actually pain. Because of years of being told I just needed to push through, I’m even worse with my interoception than I once was. It is *hard* to tell how I’m feeling, until it’s urgent. And I don’t display pain in ways people expect. I don’t cry or frown, there’s no point, it wastes energy and would be performative for me. It isn’t natural. My natural very in pain state is lying incredibly still and being silent. Doesn’t seem very alarming to doctors but by that point I can’t reliably respond to anyone and getting my point across is really difficult. It is frustrating how little room there is in the medical field for neurodiverse experiences of pain. I’ve suffered for years in part due to that and in part due to masking so hard they didn’t realize it was autism. I succeeded at my own ploy (convincing people I was normal) and for what? (They did not think I was normal).
Wow. Yes. I wonder if this connects: I’ve been told that I exhibit abnormal pain response due to abnormalities in the Anterior Cingulate Cortex. The idea was I don’t get a social “hurt” signal from physical pain. I had to work very hard years ago to learn to pay attention to and respond to pain. What is so weird though is that I will physically feel the emotional pain of others. So, I don’t feel my own physical pain as emotional nor my own emotional pain as physical, but I experience outrageous physical pain from hostility and those who are suppressing with hostility big emotions of hurt. It’s… I feel like I exist to be physically tortured. I wish this was understood. I have decades of debilitating illness behind me and I am not sick when I can get away from hostility.
I think this is a really good example of autism + environment = outcome
This resonates with me a lot (especially with my experiences of missed miscarriage and childbirth)
Childbirth and gynae stuff comes up so often here and I think there is an extra payer of medical misogyny on top of the standard Autistic stuff
This so recognisable! When I got stitches after a bike accident the nurse asked if I meditated as I was so still during the procedure. When I miscarried he ER nurse acted as if I was exaggerating, told me 'If you breathe like that the pain will be worse' and left without explaining the right way to breathe and closed the door so she didn't have to hear me crying out. Then when I gave birth to my first son I was already in hospital for a week, I felt that I wanted to call my husband in and the nurse said maybe better to wait till the doctor has seen you. I called him anyway. Then I asked the nurse to go to the toilet and she called in the doc who came in saying "This will still take a while, no rush" Then he looked and said "I already see the hairs, let's move to the delivery room fast" . I always felt that this was just peculiar bad luck and it's really helpful to understand I'm not alone in these experiences
I am autistic and ADHD. I also have Hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndome, Gastroparesis, Mast Cell Activation Syndrome, fibromyalgia—you name it, I’ve got it. I spend my day to day in considerable pain. I wasn’t diagnosed with autism until this year, at 28. I have been disabled and in chronic pain since I was about 14. At this point, my pain scale is wildly different than what doctors expect. And to be honest, I have no concept of a body free of pain. It’s only this year that someone informed me that something I was classifying as discomfort was actually pain. Because of years of being told I just needed to push through, I’m even worse with my interoception than I once was. It is *hard* to tell how I’m feeling, until it’s urgent. And I don’t display pain in ways people expect. I don’t cry or frown, there’s no point, it wastes energy and would be performative for me. It isn’t natural. My natural very in pain state is lying incredibly still and being silent. Doesn’t seem very alarming to doctors but by that point I can’t reliably respond to anyone and getting my point across is really difficult. It is frustrating how little room there is in the medical field for neurodiverse experiences of pain. I’ve suffered for years in part due to that and in part due to masking so hard they didn’t realize it was autism. I succeeded at my own ploy (convincing people I was normal) and for what? (They did not think I was normal).
Wow. Thanks for sharing. Will have to come back to this.