I completely relate to your experience <3 I've struggled to explain my pain to doctors throughout my life, dealing with both understanding ones and those who seem dismissive...  

It would have been good if your GP actually laid out what each scale of pain from 1 to 10 represented, instead of treating you like you're wasting her time. Something like this would have been helpful.

Or she could have asked you if it's a pounding pain, a sharp pain, a dull ache, or something more descriptive.

And if you cannot communicate something like pain because you don't know how to explain it, shouldn't that indicate to her that you might have issues with processing those kinds of things, and she should have looked further into it, maybe even going into detail about what she means, rather than treating you like a waste of time? 

Doctors can show such a lack of empathy sometimes. They are used to competing with each other for top grades, but they completely forget that they're getting into a profession to help others, not put themselves on a pedestal. Maybe they just did it for the money and reputation and don't care about the patients more than they have to, but those are just souless people at that point in time. 

Yup, I once broke a finger on a school try to France. So I ran it under cold water to bring down the swelling & went to inform the teachers.
They told they that they doubted whether it was broken & told me to go & run it under cold water. I told them I had already done this but they insisted I do it again.
I went back to them a 2nd time to show them. They again said that they didn't think it was broken & that I would be OK.
I spent 10days in pain with a broken finger. When I got home my Mum took me to the hospital. After confirming that it had been broken & it was too late to straighten it, or they would have to break it again to straighten it. It was strapped to my other fingers & I was offered pain killers.
My Mum then stormed up to the School & demanded to be told why I hadn't been believed or treated. They said it was because I didn't look in pain & I wasn't crying.

Simmerella said:

Does anyone else struggle explaining how they feel with pain?

Yes- very much so.I would imagine it's something that affects both male and female autistic persons. This is from a research article titled

“I am afraid of being treated badly if I show it”: A cross-sectional study of healthcare accessibility and Autism Health Passports among UK Autistic adults"

'Those who were formally diagnosed [H(2) = 11.715 p = 0.003] or undergoing diagnosis [H(2) = 11.715 p = 0.003] reported increased difficulty describing pain compared to those who were self-identifying'

'Search for 'pain'

journals.plos.org/.../article

Simmerella said:

I'm pretty sure she rolled her eyes at me though can't be 100% sure of it but I'm pretty sure I saw that. She definitely gave me a look though like I was wasting her time. 

I left feeling really awkward and lonely because no one around me gets what this is actually like. 

How horrible of her to cause you to feel like this. Im also getting upset at the lack of understanding being shown to the neurodiverse. X

I struggle with pain description so I use SOCRATES to help me structure my answers

I have always been able to deal with emotional pain as you can just bury it (not helpful in the long run) but physical pain, no, But strangely enough, yes as well, I guess it depends on the intensity of the pain. Like when I had hernia surgery, and my crushed back, in a way I kind of enjoy the pain, its almost become part of me. I feel so emotionally numb most of the time it kind of makes me feel good sometimes. Anyway touch wood I don't experience any more pain

I think when I have been asked this, they ask me to "describe the pain" which is general enough and specific enough a question for me to cope with. So I can describe if it feels like stabbing (e.g. a more intense pin/needle ***) or pounding or ache, what part of the body is affected, how big the areas are, or how it feels like I can't do anything else and have to stand still until it passes. Usually by the time I've described it fully, the clinical person has translated it into their measures, so I rarely get asked 1-10. But they also have a chart of facial expressions, if you are a visual person they might help.

It is difficult when you are in pain, to relate it to previous pain, as you are dealing with the intensity of the current pain, which may be overwhelming! Part of the difficulty is having a recognised pain response that you can compare to. Does it feel like someone has stuck a needle/pin in you? Does it feel like someone has punched you once? Does it feel like someone is continually punching you in a regular rhythmical way? Does it feel like someone has punched or pounded you in the past? Does it feel like when you had a paper cut or knife cut on a finger?

So I guess I'm suggesting that, next time, you just describe it to them in overwhelming detail, and avoid having to analyse it in their way...

Happy to see you back here! I also don’t know how I can describe pain. I can only say, where I have it if it’s pain in some part of my body. But if it’s too cold then I feel pain in my whole body. If I’m too stressed or anxious I also feel some sort of pain but I do t know where and what kind of pain. I think it’s poor interoception, if I remember the term properly. I’m sorry to hear that your doctor rolled her eyes. I also had doctors reacting similarly. It’s disheartening and actually appalling experience for the patient. Does she know that you are autistic? 

I guess I'm lucky in that having had children I can say that if 10 is child birth then 5 or 6 is the point at which I start screaming for pain relief.

Ah sorry to hear you were dealing with someone who is ignorant and yeah we have received similar treatment so I understand...hope you're feeling better:)

It definitely felt like she understood that the stress of having a cannula was a real problem, rather than me just being "soft" about it. It makes a massive difference when people understand that  the situation can cause that sort of distress and it's as real as pain is.

I'm usually pretty good in a crisis but that certainly wasn't my finest moment!

I'm the same with blood tests too, stare at the wall and pretend it isn't happening!! I think the effort to appear not to be bothered probably distracts me enough that I don't run off. 

Until I was diagnosed and started to look more into autism I didn't realise that half the things I did were somehow related to it, it's been a relief in some ways as Its explained a lot.

I would have been petrified in that situation! Doesn't sound nice at all. So sorry you went through it. Whenever I have a blood test the anxiety I endure is horrible and it almost always results in a meltdown and panic attack. Not nice and always very embarrassing. 

That's so sweet that the nurse made the effort to make things easier for you. I doubt many take the time out to do things like that. Maybe she could sense you were different or she had a relative with autism who was similar like that? I'm glad she helped you out though... that is really kind. 

I'll admit it was pretty scary, I felt really anxious while in there too post operation, having cannula in my hands and a drain tube from the op made me feel absolutely overwhelmed with anxiety. but other people in there didn't seem to have such an issue with things....

It is as another thing on the list that made me look at diagnosis, I just didn't cope with it well, although I managed to mostly hide how I felt at the time. There was one nurse who instantly seemed to pickup on my stress and arranged things to be done that helped, like having the drip removed as soon as they could as she could tell it was making me anxious, I wonder if she'd sussed me out!

Aw you poor poor thing. I'm so sorry you had to go through all of that, not just the pain but having to go in an ambulance, stay in hospital and have surgery. That must have been a hell of an ordeal for you to endure! 

You're most welcome! :) 

Last year I had a bad stomach, for a few days I didn't eat and  ended up in bed, then my wife called an ambulance. I felt it was overkill but couldn't stop her. They said I should go to hospital, I did, a few days in there unable to eat or drink ,  being asked "how much does it hurt?" And saying "5 out of 10 maybe" , they did a CT and found my appendix was in bits and I had a severe infection. Operation went ok, but took ages and they were all confused at how they missed "text book symptoms " of acute appendicitis.

Reading afterwards it's apparently common in autistic patients to miss appendicitis because we don't explain It well.It hurt like absolute hell but I had no idea how to explain it, so I thought if I go with 5 then there's room for more if it gets worse.

After a long life of knowing I had some serious issues, I was diagnosed autistic this year, I wonder if they'd have been different in diagnosis if they'd known then....

Thank you so much!  

This is very helpful and extremely reassuring. I'm so glad it isn't just me who's like this. And thanks for the links.

This can definitely be autism-related :) 

Some more info:

"Autistic people can therefore respond differently to pain. This means they may not be able to describe bodily sensations or be believed when they do. Clinical investigations need to take this into account.

Autistic people may not be able to provide an accurate assessment of the intensity of pain as a number using a traditional 1 to 10 pain score. They may see pain as a colour, or a picture. Being asked if the pain is a score of 10 – the worst they have experienced – may cause a significant delay in response. The pain may not be like anything they have experienced before. Responding literally could mean the pain is either over or under scored on the traditional scale. An autistic person may not even be able to pinpoint pain due to sensory overload from internal or external stimuli"

From: https://www.cqc.org.uk/how-you-see-me-matters-perspectives-autistic-people-using-primary-care-services/key-findings#:~:text=Autistic%20people%20may%20not%20be,a%20significant%20delay%20in%20response.

More info about sensory differences here:

https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences