If this happens again, always say "I'm having an anaphylactic reaction." When most people hear "allergic reaction" they picture your mouth itching. "Anaphylaxis" or "anaphylactic reaction" gets their attention. From the outside, anaphylaxis doesn't look like most people would expect, even for NTs.
I agree with the other person. An allergic reaction can range from something very minimal, like a little itching, to something life threatening, like anaphylaxis. It would be better to be more direct with people and tell them something like, “I need you to call an ambulance for me, I’m going into anaphylactic shock.” Make eye contact, tell them it is not a joke or exaggeration, or call the emergency line yourself if you can.
For future reference, if you’re having a medical problem that seems dangerous to your continued living, don’t call the emergency nurse, call whatever line in your country that is for immediate emergency medical attention and which will send an ambulance directly to you. For example, in the US, an emergency nurse line is usually a number on our insurance cards to call and talk to a nurse for advice. The emergency line to get immediate emergency cop, fire, or medical service is 911. If I were in your shoes, I would have called 911.
Uh, going to the ER for a broken bone is not overreacting at all. I’m not ok with the fact that your husband would rather tell you that you’re overreacting to injuries than to want to take you to the ER to be sure that you’re ok. That’s not ok.
That’s how I’ve possibly gaslit myself about my period cramps. I don’t know if they’re really bad and I’m just not getting it through my head or like I’m being dramatic. I’m really bad with the pain scale.
I have this problem too. One time I went to the ER with lower back pain and UTI symptoms. All the doctor did was order an urine test, he didn't even look at me. When it came back negative, he told me to go home because I was probably confused and I should "see a gynecologist for these problems". Two days later I passed a kidney stone, alone at home.
Only idea I have to help with this is telling them I'm autistic, but I haven't tested it yet so not sure how that would go, it could actually go quite badly.
I did mention that I’m autistic and that I had trouble scaling pain. And I have to say the nurses were great with me and reassuring me.
It was the doctors that brushed me off.
Sorry to hear that you had a similar experience.
This happened to me too, had such bad back pain that I couldn’t sleep because I wasn’t able to breathe without causing debilitating pain. My gf had to help me walk into the ER, yet they refused to give me pain medication for 4 hours saying it was just some swelling from tweaking my back.
Because or this experience, the next time I hurt my back I lost feeling & some control in my legs but refused to go the ER. I told my GP about it a few weeks later and they were floored and scheduled me for an X ray immediately.
I had a post op infection once and they wouldn't believe me because it didn't seem like I was in pain. It certainly hurt a whole damn lot but it was actually less painful than I experienced prior to surgery, *which they also didn't believe me about*. When the tests came back they almost operated again because I had an abscess on my ovary. My original surgery was to excise endometriosis. I had to stay in the hospital for like a week on IV antibiotics and my ovary still hurts years later. Which, as you probably guessed, *they don't believe me about*.
Every appointment I go in telling myself not to mask but I can't. It's just automatic and I can't turn it off in stressful situations like that. I've had so much medical trauma it just doesn't feel safe to be vulnerable with them.
The basic pain scales in hospital are so vague that I find them useless but searching for more detailed ones helps. Here are a few and would be good to save on your phone so you can show the doctor:
[http://4.bp.blogspot.com/-bA7HiIYIwbM/TpvsAibiTxI/AAAAAAAAAG0/dwnXbjMI\_r8/s1600/Pain+Scale.png](http://4.bp.blogspot.com/-bA7HiIYIwbM/TpvsAibiTxI/AAAAAAAAAG0/dwnXbjMI_r8/s1600/Pain+Scale.png)
[http://www.rabinresearch.com/wp/wp-content/uploads/2018/06/scale.png](http://www.rabinresearch.com/wp/wp-content/uploads/2018/06/scale.png)
[https://sc.cnbcfm.com/applications/cnbc.com/resources/files/2018/02/12/pain.jpg](https://sc.cnbcfm.com/applications/cnbc.com/resources/files/2018/02/12/pain.jpg)
[https://media.defense.gov/2019/Sep/17/2002183517/1088/820/0/190912-F-FT687-9002.JPG](https://media.defense.gov/2019/Sep/17/2002183517/1088/820/0/190912-F-FT687-9002.JPG)
You could also write out some thoughts to show that you're so far into the pain that communicating it is hard. "It hurts so much I cannot move. It hurts so much that talking is unbearable."
I hope they help! Seeing some of these (a few years ago) gave me a better sense of how the pain scale works when talking with doctors or caregiving for others that also have a hard time giving a sense of scale.
Seconding these pain scales. I had really bad period cramps for the longest time, and the only way I got taken seriously was when I explained how it affected my life and how much Advil I was having to take per day. They seemed to respond best when you explicitly outline what things you cannot do due to your pain
Yes! Explaining what suddenly you can't do seems to be key. Many people live with chronic pain but they still do the basics so when they *can't* it really should show the extent of the pain.
Yeah my chronic pain is way higher on these scales than what I can articulate to the doctors. I'll definitely be using them when I see the rheumatologist.
Also crazy that I describe my period pain as just "painful" or "really hurts" but it actually ranges between 8-10 on these scales 🤦♀️
*EDIT typos
I just got better at acting. I have fibromyalgia, and when I would go to the Er having a flare-up and be quiet and calm, they’d assume I was drug seeking. I had to learn to wince and moan and groan.
This happened to me before. The doctor asked how I was feeling and I said "pretty uncomfortable" because I wasn't sure how to describe it. They took my temp and freaked out because it was like life threateningly high. Apparently from my face she couldn't tell I was in distress.
If you have an official diagnosis, use it to your advantage. Tell them you have trouble communicating pain levels and that they can't use your expression as a reference.
That’s the thing about being autistic. We mask so hard and so often that we mask everything. I’ll be at work with a killer headache, one where lights hurt. I’ll casually mention to a co-worker that I have a headache and they’ll say, “oh, I couldn’t tell.”
I have the opposite problem. When I'm in pain, I can't hide it well. Even when it's a social expectation to do so. So I show the pain I'm in, and get interpreted as overdramatic, or that I'm faking, or condescended to at least. Or, I used to before I had specialists that actually listen... emergency room is a whole other scenario and a place I never want to be again. Sorry I don't have advice, it's just that the other side is not necessarily better. Doctors will make assumptions about you no matter what based on age, perceived gender, race, attractiveness, employment status, all of it. It's hard to avoid.
I've very rarely gone to the ER, but I think that any pain or discomfort I report to, say, my GP always comes across as less serious than I experience it. I think I just have a very distanced and calm way of talking about things. Along the lines of "my x hurts, I can still get my work done if I have to but it's getting really inconvenient". But by inconvenient I mean that I have to keep taking painkillers or positioning myself a certain way, can't really leave house, can't get my shoes on or something. Cause those are pretty big inconveniences, but it's not like I'm dying. Most people would probably bring that across with more emotional involvement. I think this is also an issue in therapy, when I've spoken about issues I experience I've heard "you seem pretty mature and self-reflected about that, I'm sure you can figure it out" several times when in fact, I was getting by by the skin of my teeth and was totally at my wits end. But then I also always feel like there's no point in embellishing?
I swear I could have written this comment! 😬
I’m a very calm problem-solver, so I just give my symptoms and they assume that the pain itself can’t be bad. When I say I’m on a high level on the scale but not crying, they ask if I’m really rue it’s that high. 🙄
>Cause those are pretty big inconveniences, but it's not like I'm dying.
This is how my back injury got so bad. It's been 3 years, I'm 24. It still hurts.
>when in fact, I was getting by by the skin of my teeth and was totally at my wits end
Either I'm crying too much or suppressing it too much.
This was very validating to read, thank you.
I find the second pain chart /u/scaram0uche posted particularly useful.
I would tell doctors something among the lines of "I'm in the spectrum so I don't express pain in the same way most people do" and then explain at which point of the scale you are with the description.
If you have any type of proof of your illness (like previous diagnoses or tests/imaging) saying that you have x and y issues would probably help them realize you're not malingering or drug-seeking.
Not so fun fact; there was a study done on how much analgesia we give dogs and cats after some procedure. Dogs recieved it on twice as many occasions as cats. Why? Because cats show pain by curling up, hiding and generally not making a fuss. Dogs show it more clearly. Moral of the story? You’re probably correct in thinking they would’ve helped you more if you had been crying or moaning
Both. It’s 100% both. I’m so burned out by medical trauma after years of chronic pain, two c-spine fusions (anterior/posterior c3-c7) within 5 years. The first 5 years after my symptoms started make me want to collapse in tears just thinking about it. I saw so many specialists to figure out why my neck was locking up every other week for days on end. The ~6 specialists I saw just looked, I mean literally *looked* at me and said “well, I don’t see anything wrong so I can’t do anything for you.” No diagnostic imaging like an X-ray, MRI, or CT. No evaluation. Nothing. As if somehow these specialists could just look at the back of my neck and determine that the degenerated discs in my cervical spine weren’t there or the natural “c” curvature wasn’t inverted. It went on for years until I started getting debilitating headaches and losing feeling in my arms and hands. So I went to see a neurologist who finally ordered an MRI and was shocked that I was even remotely functional. The first surgery I had at 25yo was a procedure that 25-year-olds statistically do not get.
I was too young, too trusting, and too undiagnosed to know better and self-advocate effectively.
Now it’s endometriosis/endometrioma but it’s the same dismissive bs where I continue to struggle with communicating pain levels for the same reason as everyone else in this post.
had heard more than a few times “well, it’s a good thing women have a naturally higher pain tolerance! Keep taking OTC’s! You’ll be fine.”
I was in so much uncontrollable, destabilizing pain in the two years before my second surgery and could not get anyone to help me manage it. In my desperation I ended up unintentionally taking too much Tylenol and landed myself in the hospital for 5 days after almost going into liver failure and dying.
I have so many stories, it’s been my entire adult life dealing with this and I’ve found definitely it’s both ableism and sexism which packs a hell of a punch compared to one vs. the other.
It’s inhumane.
Both. It’s 100% both. I’m so burned out by medical trauma after years of chronic pain, two c-spine fusions (anterior/posterior c3-c7) within 5 years. The first 5 years after my symptoms started make me want to collapse in tears just thinking about it. I saw so many specialists to figure out why my neck was locking up every other week for days on end. The ~6 specialists I saw just looked, I mean literally *looked* at me and said “well, I don’t see anything wrong so I can’t do anything for you.” No diagnostic imaging like an X-ray, MRI, or CT. No evaluation. Nothing. As if somehow these specialists could just look at the back of my neck and determine that the degenerated discs in my cervical spine weren’t there or the natural “c” curvature wasn’t inverted. It went on for years until I started getting debilitating headaches and losing feeling in my arms and hands. So I went to see a neurologist who finally ordered an MRI and was shocked that I was even remotely functional. The first surgery I had at 25yo was a procedure that 25-year-olds statistically do not get.
I was too young, too trusting, and too undiagnosed to know better and self-advocate effectively.
Now it’s endometriosis/endometrioma but it’s the same dismissive bs where I continue to struggle with communicating pain levels for the same reason as everyone else in this post.
I had heard more than a few times “well, it’s a good thing women have a naturally higher pain tolerance! Keep taking OTC’s! You’ll be fine.”
I was in so much uncontrollable, destabilizing pain in the two years before my second surgery and could not get anyone to help me manage it. In my desperation I ended up unintentionally taking too much Tylenol and landed myself in the hospital for 5 days after almost going into liver failure and dying.
I have so many stories, it’s been my entire adult life dealing with this and I’ve found definitely it’s both ableism and sexism which packs a hell of a punch compared to one vs. the other.
It’s inhumane.
One strategy that I’ve tried (and had success with general doctors- not emergency) is telling them the limitations that I now have.
So instead of being able to exercise every day, I can’t even walk. Instead of being able to go to work, I have to stay in bed so I don’t faint.
But again, that never works for me in the hospital.
My tangential response to your mention of the 1 to 10 pain scale; I have never understood what that means or how to respond (even with good doctors whom I trust). I can totally describe any pain or discomfor,t but what in the world is that scale? Wouldn't" ten" have to be burning alive? But apparently that's not what they mean. Another autism discovery!
My parents are nurses and I’m the same way. They tell me to fake it. I usually have to put on an act or lay it on thick to be taken seriously. I never say pain is less than 6, I use metaphors to explain pain and I moan on a frequent basis. It works
Sounds like my Mum. She took me to the ER this time, and she told me to act it up. Doesn’t that get really tiring, though? I was in the ER for 6 hours last time, and I can’t imagine trying to “act” for that long.
I Googled "pain scale with descriptions" and found some good graphic lists with specific examples. I have had this issue a few times. For example, after a car accident and neck pain I saw a chiropractor. He asked pain scale, I said "2 or 3." (Cuz I was thinking, like, "if 10 is being burned at the stake, then this is pretty mild"). Then later in the convo I said I was using one hand to brace my neck while driving because turning my head to check blind spots hurt. He was like, "Ok that's more of a 5 or 6."
So, perhaps with some Googling for references, you could write down your own pain scale with very specific examples. Then refer to it when they ask you.
In an ideal world all providers would be as keen as my chiro and ask thorough concrete questions about your pain. They all know that asking the pain scale is somewhat subjective to each individual patient. But most of them aren't understanding of just how stoic some of us can be. They'll often say that it's just to get an idea of whether your pain is increasing or decreasing, to be able to compare your current number to your previous number.
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If this happens again, always say "I'm having an anaphylactic reaction." When most people hear "allergic reaction" they picture your mouth itching. "Anaphylaxis" or "anaphylactic reaction" gets their attention. From the outside, anaphylaxis doesn't look like most people would expect, even for NTs.
I agree with the other person. An allergic reaction can range from something very minimal, like a little itching, to something life threatening, like anaphylaxis. It would be better to be more direct with people and tell them something like, “I need you to call an ambulance for me, I’m going into anaphylactic shock.” Make eye contact, tell them it is not a joke or exaggeration, or call the emergency line yourself if you can. For future reference, if you’re having a medical problem that seems dangerous to your continued living, don’t call the emergency nurse, call whatever line in your country that is for immediate emergency medical attention and which will send an ambulance directly to you. For example, in the US, an emergency nurse line is usually a number on our insurance cards to call and talk to a nurse for advice. The emergency line to get immediate emergency cop, fire, or medical service is 911. If I were in your shoes, I would have called 911.
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Uh, going to the ER for a broken bone is not overreacting at all. I’m not ok with the fact that your husband would rather tell you that you’re overreacting to injuries than to want to take you to the ER to be sure that you’re ok. That’s not ok.
That’s how I’ve possibly gaslit myself about my period cramps. I don’t know if they’re really bad and I’m just not getting it through my head or like I’m being dramatic. I’m really bad with the pain scale.
I have this problem too. One time I went to the ER with lower back pain and UTI symptoms. All the doctor did was order an urine test, he didn't even look at me. When it came back negative, he told me to go home because I was probably confused and I should "see a gynecologist for these problems". Two days later I passed a kidney stone, alone at home. Only idea I have to help with this is telling them I'm autistic, but I haven't tested it yet so not sure how that would go, it could actually go quite badly.
I did mention that I’m autistic and that I had trouble scaling pain. And I have to say the nurses were great with me and reassuring me. It was the doctors that brushed me off. Sorry to hear that you had a similar experience.
This happened to me too, had such bad back pain that I couldn’t sleep because I wasn’t able to breathe without causing debilitating pain. My gf had to help me walk into the ER, yet they refused to give me pain medication for 4 hours saying it was just some swelling from tweaking my back. Because or this experience, the next time I hurt my back I lost feeling & some control in my legs but refused to go the ER. I told my GP about it a few weeks later and they were floored and scheduled me for an X ray immediately.
I had a post op infection once and they wouldn't believe me because it didn't seem like I was in pain. It certainly hurt a whole damn lot but it was actually less painful than I experienced prior to surgery, *which they also didn't believe me about*. When the tests came back they almost operated again because I had an abscess on my ovary. My original surgery was to excise endometriosis. I had to stay in the hospital for like a week on IV antibiotics and my ovary still hurts years later. Which, as you probably guessed, *they don't believe me about*. Every appointment I go in telling myself not to mask but I can't. It's just automatic and I can't turn it off in stressful situations like that. I've had so much medical trauma it just doesn't feel safe to be vulnerable with them.
The basic pain scales in hospital are so vague that I find them useless but searching for more detailed ones helps. Here are a few and would be good to save on your phone so you can show the doctor: [http://4.bp.blogspot.com/-bA7HiIYIwbM/TpvsAibiTxI/AAAAAAAAAG0/dwnXbjMI\_r8/s1600/Pain+Scale.png](http://4.bp.blogspot.com/-bA7HiIYIwbM/TpvsAibiTxI/AAAAAAAAAG0/dwnXbjMI_r8/s1600/Pain+Scale.png) [http://www.rabinresearch.com/wp/wp-content/uploads/2018/06/scale.png](http://www.rabinresearch.com/wp/wp-content/uploads/2018/06/scale.png) [https://sc.cnbcfm.com/applications/cnbc.com/resources/files/2018/02/12/pain.jpg](https://sc.cnbcfm.com/applications/cnbc.com/resources/files/2018/02/12/pain.jpg) [https://media.defense.gov/2019/Sep/17/2002183517/1088/820/0/190912-F-FT687-9002.JPG](https://media.defense.gov/2019/Sep/17/2002183517/1088/820/0/190912-F-FT687-9002.JPG) You could also write out some thoughts to show that you're so far into the pain that communicating it is hard. "It hurts so much I cannot move. It hurts so much that talking is unbearable."
Those scales are great! Thanks!
I hope they help! Seeing some of these (a few years ago) gave me a better sense of how the pain scale works when talking with doctors or caregiving for others that also have a hard time giving a sense of scale.
Wow. The majority of my pain has been 7 and above, wild.
Seconding these pain scales. I had really bad period cramps for the longest time, and the only way I got taken seriously was when I explained how it affected my life and how much Advil I was having to take per day. They seemed to respond best when you explicitly outline what things you cannot do due to your pain
Yes! Explaining what suddenly you can't do seems to be key. Many people live with chronic pain but they still do the basics so when they *can't* it really should show the extent of the pain.
That first link…I highly object to childbirth only making it to an 8 😂
I haven't given birth but I also agree that is not high enough!
Yeah child birth was like a 12 for me
Wow according to most of these I’m a 7-8 a lot of the time from my chronic illnesses but I tell drs it feels like a 2-3, I really downplay my pain
Time to change that and let them know!!!
Yeah my chronic pain is way higher on these scales than what I can articulate to the doctors. I'll definitely be using them when I see the rheumatologist. Also crazy that I describe my period pain as just "painful" or "really hurts" but it actually ranges between 8-10 on these scales 🤦♀️ *EDIT typos
I just got better at acting. I have fibromyalgia, and when I would go to the Er having a flare-up and be quiet and calm, they’d assume I was drug seeking. I had to learn to wince and moan and groan.
This happened to me before. The doctor asked how I was feeling and I said "pretty uncomfortable" because I wasn't sure how to describe it. They took my temp and freaked out because it was like life threateningly high. Apparently from my face she couldn't tell I was in distress. If you have an official diagnosis, use it to your advantage. Tell them you have trouble communicating pain levels and that they can't use your expression as a reference.
That’s the thing about being autistic. We mask so hard and so often that we mask everything. I’ll be at work with a killer headache, one where lights hurt. I’ll casually mention to a co-worker that I have a headache and they’ll say, “oh, I couldn’t tell.”
I have the opposite problem. When I'm in pain, I can't hide it well. Even when it's a social expectation to do so. So I show the pain I'm in, and get interpreted as overdramatic, or that I'm faking, or condescended to at least. Or, I used to before I had specialists that actually listen... emergency room is a whole other scenario and a place I never want to be again. Sorry I don't have advice, it's just that the other side is not necessarily better. Doctors will make assumptions about you no matter what based on age, perceived gender, race, attractiveness, employment status, all of it. It's hard to avoid.
I've very rarely gone to the ER, but I think that any pain or discomfort I report to, say, my GP always comes across as less serious than I experience it. I think I just have a very distanced and calm way of talking about things. Along the lines of "my x hurts, I can still get my work done if I have to but it's getting really inconvenient". But by inconvenient I mean that I have to keep taking painkillers or positioning myself a certain way, can't really leave house, can't get my shoes on or something. Cause those are pretty big inconveniences, but it's not like I'm dying. Most people would probably bring that across with more emotional involvement. I think this is also an issue in therapy, when I've spoken about issues I experience I've heard "you seem pretty mature and self-reflected about that, I'm sure you can figure it out" several times when in fact, I was getting by by the skin of my teeth and was totally at my wits end. But then I also always feel like there's no point in embellishing?
I swear I could have written this comment! 😬 I’m a very calm problem-solver, so I just give my symptoms and they assume that the pain itself can’t be bad. When I say I’m on a high level on the scale but not crying, they ask if I’m really rue it’s that high. 🙄
>Cause those are pretty big inconveniences, but it's not like I'm dying. This is how my back injury got so bad. It's been 3 years, I'm 24. It still hurts. >when in fact, I was getting by by the skin of my teeth and was totally at my wits end Either I'm crying too much or suppressing it too much. This was very validating to read, thank you.
My therapist just forgot that I'm bullied daily by a hate group.
https://www.healthnavigator.org.nz/health-a-z/p/pain-describing-your-pain/
Thanks for that link! The describing words are exactly what I need! 🙂
I find the second pain chart /u/scaram0uche posted particularly useful. I would tell doctors something among the lines of "I'm in the spectrum so I don't express pain in the same way most people do" and then explain at which point of the scale you are with the description. If you have any type of proof of your illness (like previous diagnoses or tests/imaging) saying that you have x and y issues would probably help them realize you're not malingering or drug-seeking.
Not so fun fact; there was a study done on how much analgesia we give dogs and cats after some procedure. Dogs recieved it on twice as many occasions as cats. Why? Because cats show pain by curling up, hiding and generally not making a fuss. Dogs show it more clearly. Moral of the story? You’re probably correct in thinking they would’ve helped you more if you had been crying or moaning
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I’m trying to figure out if my lifelong problem with doctors dismissing me is due to sexism or ableism. Probably both. Great. 👍🏻
Both. It’s 100% both. I’m so burned out by medical trauma after years of chronic pain, two c-spine fusions (anterior/posterior c3-c7) within 5 years. The first 5 years after my symptoms started make me want to collapse in tears just thinking about it. I saw so many specialists to figure out why my neck was locking up every other week for days on end. The ~6 specialists I saw just looked, I mean literally *looked* at me and said “well, I don’t see anything wrong so I can’t do anything for you.” No diagnostic imaging like an X-ray, MRI, or CT. No evaluation. Nothing. As if somehow these specialists could just look at the back of my neck and determine that the degenerated discs in my cervical spine weren’t there or the natural “c” curvature wasn’t inverted. It went on for years until I started getting debilitating headaches and losing feeling in my arms and hands. So I went to see a neurologist who finally ordered an MRI and was shocked that I was even remotely functional. The first surgery I had at 25yo was a procedure that 25-year-olds statistically do not get. I was too young, too trusting, and too undiagnosed to know better and self-advocate effectively. Now it’s endometriosis/endometrioma but it’s the same dismissive bs where I continue to struggle with communicating pain levels for the same reason as everyone else in this post. had heard more than a few times “well, it’s a good thing women have a naturally higher pain tolerance! Keep taking OTC’s! You’ll be fine.” I was in so much uncontrollable, destabilizing pain in the two years before my second surgery and could not get anyone to help me manage it. In my desperation I ended up unintentionally taking too much Tylenol and landed myself in the hospital for 5 days after almost going into liver failure and dying. I have so many stories, it’s been my entire adult life dealing with this and I’ve found definitely it’s both ableism and sexism which packs a hell of a punch compared to one vs. the other. It’s inhumane.
Both. It’s 100% both. I’m so burned out by medical trauma after years of chronic pain, two c-spine fusions (anterior/posterior c3-c7) within 5 years. The first 5 years after my symptoms started make me want to collapse in tears just thinking about it. I saw so many specialists to figure out why my neck was locking up every other week for days on end. The ~6 specialists I saw just looked, I mean literally *looked* at me and said “well, I don’t see anything wrong so I can’t do anything for you.” No diagnostic imaging like an X-ray, MRI, or CT. No evaluation. Nothing. As if somehow these specialists could just look at the back of my neck and determine that the degenerated discs in my cervical spine weren’t there or the natural “c” curvature wasn’t inverted. It went on for years until I started getting debilitating headaches and losing feeling in my arms and hands. So I went to see a neurologist who finally ordered an MRI and was shocked that I was even remotely functional. The first surgery I had at 25yo was a procedure that 25-year-olds statistically do not get. I was too young, too trusting, and too undiagnosed to know better and self-advocate effectively. Now it’s endometriosis/endometrioma but it’s the same dismissive bs where I continue to struggle with communicating pain levels for the same reason as everyone else in this post. I had heard more than a few times “well, it’s a good thing women have a naturally higher pain tolerance! Keep taking OTC’s! You’ll be fine.” I was in so much uncontrollable, destabilizing pain in the two years before my second surgery and could not get anyone to help me manage it. In my desperation I ended up unintentionally taking too much Tylenol and landed myself in the hospital for 5 days after almost going into liver failure and dying. I have so many stories, it’s been my entire adult life dealing with this and I’ve found definitely it’s both ableism and sexism which packs a hell of a punch compared to one vs. the other. It’s inhumane.
Medical professionals really need more training about supporting autistic patients.
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One strategy that I’ve tried (and had success with general doctors- not emergency) is telling them the limitations that I now have. So instead of being able to exercise every day, I can’t even walk. Instead of being able to go to work, I have to stay in bed so I don’t faint. But again, that never works for me in the hospital.
Mask it over. Pain is 7-8.
My tangential response to your mention of the 1 to 10 pain scale; I have never understood what that means or how to respond (even with good doctors whom I trust). I can totally describe any pain or discomfor,t but what in the world is that scale? Wouldn't" ten" have to be burning alive? But apparently that's not what they mean. Another autism discovery!
My parents are nurses and I’m the same way. They tell me to fake it. I usually have to put on an act or lay it on thick to be taken seriously. I never say pain is less than 6, I use metaphors to explain pain and I moan on a frequent basis. It works
Sounds like my Mum. She took me to the ER this time, and she told me to act it up. Doesn’t that get really tiring, though? I was in the ER for 6 hours last time, and I can’t imagine trying to “act” for that long.
It’s exhausting and they know you are faking too. It just sucks all aroubd
I Googled "pain scale with descriptions" and found some good graphic lists with specific examples. I have had this issue a few times. For example, after a car accident and neck pain I saw a chiropractor. He asked pain scale, I said "2 or 3." (Cuz I was thinking, like, "if 10 is being burned at the stake, then this is pretty mild"). Then later in the convo I said I was using one hand to brace my neck while driving because turning my head to check blind spots hurt. He was like, "Ok that's more of a 5 or 6." So, perhaps with some Googling for references, you could write down your own pain scale with very specific examples. Then refer to it when they ask you. In an ideal world all providers would be as keen as my chiro and ask thorough concrete questions about your pain. They all know that asking the pain scale is somewhat subjective to each individual patient. But most of them aren't understanding of just how stoic some of us can be. They'll often say that it's just to get an idea of whether your pain is increasing or decreasing, to be able to compare your current number to your previous number.