- Messages
- 10
The following is a description of events that took place this afternoon when I went to the dentist, including some description of ME/CFS (I took it from my Twitter, so I had to produce some background info for them). This is very long so I understand if you don't read it all the way down. For those of you well versed in ME/CFS - which I'm sure is most of us - then please skip ahead to the 4th paragraph.
"oh my god. when I get back home I'm going to carry this thread on and basically explain how I've just had the worst dentist experience of my life. I'm not even in pain & I didn't even lie down in the chair. Just got talked down to and left feeling completely disheartened. i'm upset to be honest.
to cut to the chase, i suffer from myalgic encephalomyelitis, which is commonly known as either chronic fatigue syndrome or just "ME/CFS". symptoms typically affect the immune & nervous systems, as well as affecting muscle capabilities & cognitive functions (i.e. the brain). i get exhausted easily, my blood pressure drops if i stand up for too long (say, 20 mins), i muddle my words up sometimes. that sort of stuff.
but on top of that, trivial things like going to the dentist can be unpredictable because of how compromised my immune system really is. you see, when ME/CFS symptoms flare up they can cause "crashes" that are similar to hypo reactions (anyone who has diabetes will know). i can end up vomiting for hours, unable to move my limbs & feeling like i've been hit by a car. thankfully that's not happened for a while.
but going to the dentist & having the standard numbing injections can cause a "crash" because of the adrenaline found in them. this is based almost entirely on anecdotal evidence since there is very little research/funding into the nuanced effects of ME/CFS. but they've essentially managed to work out that the nervous system affected by ME/CFS struggles to filter the adrenaline in the blood. this means that, if i'm injected with adrenaline numbing, my body could be tricked into thinking i'm running/playing football/being active. this is likely to cause a "crash" or a worsening of my symptoms, and many ME/CFS sufferers have reported similar experiences over the years.
so last month i was told i need a filling that would therefore require an injection - alarm bells immediately went off in my head: "oops". i pleaded with my dentist not to do it because of the reasons i've stated above, so she said "okay buddy, i'll write some stuff down for you". she referred me to the university of manchester dental hospital - which is where i've been today: "specialists are there, they'll help," she said.
so off i go, about 2:15pm today, to the dentist to see Dr A Al-Khayatt. immediately something seems off when he asks me to sit down. it turned out that, contrary to what i thought, i'd been sent for a second opinion rather than specialist treatment. he asked me why i'd come. i said "well, my dentist said you had adrenaline-free numbing here and that you'd help me? other than that i'm not really sure."
Dr A: "why do you need adrenaline-free numbing? why not just the normal one?"
Me: "well, i have ME/CFS and i could react badly to it."
Dr A: "is there any scientific evidence for this?"
Me: "well, not really, no, because there's been no research into it."
Dr A, voice raised slightly: "so you want me to treat you based on anecdotal evidence?"
Me: "no, i'd just like to--" he cut me off.
Dr A: "I can only go off scientific fact. wouldn't you rather i treated you with something based on scientific evidence?"
Me: "but that's my point, there's been no research because there's no funding. i'd rather you trusted people like me who have ME/CFS"
Dr A: "Nobody is forcing you to have the injection, it would just be a lot worse without it"
Me: "but i think that is what i want to do"
Dr A, voice raised: "i treat patients with all sorts of illnesses, including ME/CFS, and i've never seen anyone have a bad reaction to adrenaline."
Me: "but it happens after the treatm---" he cuts me off again.
Dr A: "but there's no scientific fact, i can only go off scientific fact. your dentist has sent you here because he--"
Me: "She"
Dr A: "he's not sent you here for treatment, he can get the adrenaline-free one by ordering it".
after that Dr A carried on saying things like "scientific basis" and even asked me if i'd "been tested" for a reaction to adrenaline. but i'd rather not be flat on my back for five days just to prove something that's already entirely possible. i can't afford to do that. so he said "get your physician to write to me, saying what you've said, and only then will i go forward with the treatment." so essentially he told me that he doesn't trust people with ME/CFS, he just trusts who the words come from. he made me feel terrible.
he was really aggressive & patronising, misgendered my dentist even after i'd corrected him, and used his position to elevate his opinion: "in the end, i know scientific fact because i'm a dentist and you don't" was his overriding argument throughout the entire ordeal. i walked out with my head down - i'm devastated that someone in such a high profile position is so ignorant.
he even asked me about dental work i'd had done 10 years ago in order to make it seem like i'd always been fine with adrenaline numbing, but i've only had ME/CFS for 18 months. he should know that, right? he has my medical records & easy access to them, right? never have i felt so put down by anybody. he really, really got me. just defeated.
at one point i stood up to read notes from my dentist that he had on his desk and he told me to "sit back down" so that he could carry on talking down *at* me. essentially all i know is that i should speak to my "ME/CFS physician" which is a position i've never come across. i have physiotherapy once every 3 months and i know a couple of support group leaders. are any of those people "physicians"?
i just left on the verge of tears. i felt awful, completely isolated and alone with my condition while a clever man spoke down to me. and Dr A, with his vile opinions, could have potentially put his fingers in my mouth. ew.
"oh my god. when I get back home I'm going to carry this thread on and basically explain how I've just had the worst dentist experience of my life. I'm not even in pain & I didn't even lie down in the chair. Just got talked down to and left feeling completely disheartened. i'm upset to be honest.
to cut to the chase, i suffer from myalgic encephalomyelitis, which is commonly known as either chronic fatigue syndrome or just "ME/CFS". symptoms typically affect the immune & nervous systems, as well as affecting muscle capabilities & cognitive functions (i.e. the brain). i get exhausted easily, my blood pressure drops if i stand up for too long (say, 20 mins), i muddle my words up sometimes. that sort of stuff.
but on top of that, trivial things like going to the dentist can be unpredictable because of how compromised my immune system really is. you see, when ME/CFS symptoms flare up they can cause "crashes" that are similar to hypo reactions (anyone who has diabetes will know). i can end up vomiting for hours, unable to move my limbs & feeling like i've been hit by a car. thankfully that's not happened for a while.
but going to the dentist & having the standard numbing injections can cause a "crash" because of the adrenaline found in them. this is based almost entirely on anecdotal evidence since there is very little research/funding into the nuanced effects of ME/CFS. but they've essentially managed to work out that the nervous system affected by ME/CFS struggles to filter the adrenaline in the blood. this means that, if i'm injected with adrenaline numbing, my body could be tricked into thinking i'm running/playing football/being active. this is likely to cause a "crash" or a worsening of my symptoms, and many ME/CFS sufferers have reported similar experiences over the years.
so last month i was told i need a filling that would therefore require an injection - alarm bells immediately went off in my head: "oops". i pleaded with my dentist not to do it because of the reasons i've stated above, so she said "okay buddy, i'll write some stuff down for you". she referred me to the university of manchester dental hospital - which is where i've been today: "specialists are there, they'll help," she said.
so off i go, about 2:15pm today, to the dentist to see Dr A Al-Khayatt. immediately something seems off when he asks me to sit down. it turned out that, contrary to what i thought, i'd been sent for a second opinion rather than specialist treatment. he asked me why i'd come. i said "well, my dentist said you had adrenaline-free numbing here and that you'd help me? other than that i'm not really sure."
Dr A: "why do you need adrenaline-free numbing? why not just the normal one?"
Me: "well, i have ME/CFS and i could react badly to it."
Dr A: "is there any scientific evidence for this?"
Me: "well, not really, no, because there's been no research into it."
Dr A, voice raised slightly: "so you want me to treat you based on anecdotal evidence?"
Me: "no, i'd just like to--" he cut me off.
Dr A: "I can only go off scientific fact. wouldn't you rather i treated you with something based on scientific evidence?"
Me: "but that's my point, there's been no research because there's no funding. i'd rather you trusted people like me who have ME/CFS"
Dr A: "Nobody is forcing you to have the injection, it would just be a lot worse without it"
Me: "but i think that is what i want to do"
Dr A, voice raised: "i treat patients with all sorts of illnesses, including ME/CFS, and i've never seen anyone have a bad reaction to adrenaline."
Me: "but it happens after the treatm---" he cuts me off again.
Dr A: "but there's no scientific fact, i can only go off scientific fact. your dentist has sent you here because he--"
Me: "She"
Dr A: "he's not sent you here for treatment, he can get the adrenaline-free one by ordering it".
after that Dr A carried on saying things like "scientific basis" and even asked me if i'd "been tested" for a reaction to adrenaline. but i'd rather not be flat on my back for five days just to prove something that's already entirely possible. i can't afford to do that. so he said "get your physician to write to me, saying what you've said, and only then will i go forward with the treatment." so essentially he told me that he doesn't trust people with ME/CFS, he just trusts who the words come from. he made me feel terrible.
he was really aggressive & patronising, misgendered my dentist even after i'd corrected him, and used his position to elevate his opinion: "in the end, i know scientific fact because i'm a dentist and you don't" was his overriding argument throughout the entire ordeal. i walked out with my head down - i'm devastated that someone in such a high profile position is so ignorant.
he even asked me about dental work i'd had done 10 years ago in order to make it seem like i'd always been fine with adrenaline numbing, but i've only had ME/CFS for 18 months. he should know that, right? he has my medical records & easy access to them, right? never have i felt so put down by anybody. he really, really got me. just defeated.
at one point i stood up to read notes from my dentist that he had on his desk and he told me to "sit back down" so that he could carry on talking down *at* me. essentially all i know is that i should speak to my "ME/CFS physician" which is a position i've never come across. i have physiotherapy once every 3 months and i know a couple of support group leaders. are any of those people "physicians"?
i just left on the verge of tears. i felt awful, completely isolated and alone with my condition while a clever man spoke down to me. and Dr A, with his vile opinions, could have potentially put his fingers in my mouth. ew.