I was just recommended your podcast about a week ago and am loving it. But this episode was a hard listen, while also being very validating. I've been trying for years to get doctors to take my multiple health issues seriously but they continue to focus on one symptom at a time. It takes me months, if not years, to gather enough strength and energy to go back each time. And if I go with research or lists of symptoms, I'm treated as a hyperchondriac and they try to refer me to the mental health service, when I want to address issues like massive fatigue, muscle weakness and breathlessness.
I have little to no confidence in doctors outside of acute physical issues (e.g. I've had kidney stones twice and tore my whole knee open once and they could deal with this things). I wasn't diagnosed with asthma till I was 20, with autism till I was 45, with ADHD till I was 50 and for the last 2, only after I'd self-diagnosed and was just asking for a referral. I now realise the terrible PMS I've experienced all my adult life might well have been PMDD, but I'd never heard of that till last year.
And yes, I've been gaslit and experienced serious ableism in medical settings, including a stubborn refusal to give me one simple accommodation without a fight - one doctor told me it wouldn't be fair on other patients!! Like it wouldn't be fair on sighted people to give an unsighted person a white cane or a guide dog? All I wanted was a method to book appointments that didn't involve a phone call - like an email address or text number. They did give in eventually but so very reluctantly that even now it's easier to ask my husband to call them in my behalf.
Sorry, this has got long and I didn't mean to give a life history. But there's so much more - a prolapsed disc, chronic pain, 3 lost pregnancies, post natal depression, "ob*sity", carpal tunnel syndrome, eczema (all pre autism dx), perimenopause... the list goes on.
Meanwhile, thank you for the podcast! I don't know if you've stopped doing new episodes now for good or temporarily. I hope you do more, but I've got plenty more to listen to for now so it's all good 😊
We take summers off to regroup and do parenting stuff but we start recording again September 5th and new episodes will start airing in October! We like to have a few episodes in reserve so it's not all jammed up!
Thanks for listening... On Fridays next season we will be doing more episodes like this one and maybe you will get some new ideas to try from those episodes!
Good episode and generally great podcast! Consistent with my experiences.
I am wondering if you are aware of Autistic Doctors International. I found out about it with the Neurodivergent Woman's episode (Season 3, Ep. 5) on disability with Dr. Sarah Bernard. https://autisticdoctorsinternational.com/. I also heard another podcast interview involving an Autistic Doctor in the US starting a clinic for Neurodivergent and other medically disadvantaged clients.
Today's podcast was very American centred. The whole authority ranking thing doesn't matter in my country (Australia) our Doctors are fine with being spoken to in a casual way, I've never called anyone Ma'am or Sir, Titles are used in primary and high schools Ms/Mx/Mr/Mrs by students, although there were a couple of teachers I had who we referred to by their nicknames. I've heard from other Australians that move to the US they get called rude for their lack of respect for bosses etc.
I have experienced medical bias when getting my EDS and von willebrands diagnosed as both were considered to rare to test for, until I switched doctors for one recommended to me by a friend who had EDS. I also find Doctors tend to ignore the EDS diagnosis and concentrate on my Fibro as that is easier to treat.
This was great. Dr. Mel Houser, an autistic MD, talks about “all the things” that co-occur with autism, she would be an excellent guest (see interviews on yt and princess and the pea podcast). I have all the things. Only note is that allergies/eczema are immune
(body attacks non-body) but not autoimmune (body attacks itself). MCAS, POTS, faulty connective tissue diagnoses are complicated, and gaslighting is the most common response when seeking help:( I would love to have tips on surviving medical gaslighting after years of being told it was all “in my head” but was actually hEDS, POTS, etc. Plus there is a real communication barrier because details matter to us but not MDs. Apparently med schools teach a trope about women who bring lists (etc.) to MD appointments. Best thing to do based on sociological research is bring a white man with you. I wish I could bring a lawyer because MDs certainly don’t follow their own “due diligence” rule. If you research Dr. Houser and her All Brains Belong organization (which has created a resource about how all the things are connected), you will love her work. I’m enjoying binging your podcast very much, thank you!
As the late-dx'd mom (at 66!) of a 30YO autistic daughter, with a 95YO autistic mother, this was an excellent episode. So much resonated with me! My daughter only discovered she has EDS last winter, and also some variety of orthostatic intolerance (not sure yet if it's actually POTS). We're hoping that will help her in her efforts to get disability support, because she's been dealing with too much fatigue and pain to work more than a few hours/week.
Thank you for all of this information. I relate on so many levels. I am pretty sure my son has EDS and MCA. I am hyper mobile which is really affecting me as I age. I love that you are going to be a doula for Autistic people. I think I am super disassociated with my body and I gave birth easily. I have super high pain tolerance but I am also very in tune with my body and when things are not right. I don’t know. I don’t think I have many sensory things going on but I think it is because I am so hypo sensitive. Like I lay on my hands when I sleep or need to tuck my hands and arms under my body. My sons do that too. Is that common? What about rheumatoid arthritis? I had a lot of fertility issues but not due to polycystic ovaries I just did not make enough progesterone. My thyroid levels are always at a low 1 and I have always thought I have hypothyroidism, but I am always gaslighted. I wish more medical professionals knew about all of this. And sorry for so many posts and typos. It’s my impulsivity. I can’t always control it and I overlook a lot of my mistakes or the mistakes my phone makes. So I am sorry if my posts make you cringe Angela!
Oh the authority figure thing! Ugh! I think it is easy for Autistic people to not care about titles because we know that someone can be even more knowledgeable without the credential because of hyper focus. I was blown away when someone told me the difference in motivation at work between autistic people and allistic people is that allistic people are motivated by power and status. We are motivated by doing a good job. So we expose the allistic person’s insecurities. But we don’t want to take power away we just want things to honestly run better. I run into this all of the time as well! Especially when it comes to my son. I spend a lot of time in the ER and totally head but with the ER staff. And you do jot have a bad personality!!! You’re just honest and genuine. I usually just do what the dumb ER doctors say so that we can be discharged, and my son not treated. It’s hard to have a non-speaking child that has a hard time identifying what is going on. OR he is totally telling us what is going on and the stupid doctors miss it. My son had a staph infection in his nostril. He kept putting things in his nostril and the doctor wanted to look for something stuck. Then gave up and diagnosed him with sinusitis even when he had NO discharge at all. It took 3 trips to the ER for one of the doctors to realize he had a staph infection. OMG it is unreal.
I was just recommended your podcast about a week ago and am loving it. But this episode was a hard listen, while also being very validating. I've been trying for years to get doctors to take my multiple health issues seriously but they continue to focus on one symptom at a time. It takes me months, if not years, to gather enough strength and energy to go back each time. And if I go with research or lists of symptoms, I'm treated as a hyperchondriac and they try to refer me to the mental health service, when I want to address issues like massive fatigue, muscle weakness and breathlessness.
I have little to no confidence in doctors outside of acute physical issues (e.g. I've had kidney stones twice and tore my whole knee open once and they could deal with this things). I wasn't diagnosed with asthma till I was 20, with autism till I was 45, with ADHD till I was 50 and for the last 2, only after I'd self-diagnosed and was just asking for a referral. I now realise the terrible PMS I've experienced all my adult life might well have been PMDD, but I'd never heard of that till last year.
And yes, I've been gaslit and experienced serious ableism in medical settings, including a stubborn refusal to give me one simple accommodation without a fight - one doctor told me it wouldn't be fair on other patients!! Like it wouldn't be fair on sighted people to give an unsighted person a white cane or a guide dog? All I wanted was a method to book appointments that didn't involve a phone call - like an email address or text number. They did give in eventually but so very reluctantly that even now it's easier to ask my husband to call them in my behalf.
Sorry, this has got long and I didn't mean to give a life history. But there's so much more - a prolapsed disc, chronic pain, 3 lost pregnancies, post natal depression, "ob*sity", carpal tunnel syndrome, eczema (all pre autism dx), perimenopause... the list goes on.
Meanwhile, thank you for the podcast! I don't know if you've stopped doing new episodes now for good or temporarily. I hope you do more, but I've got plenty more to listen to for now so it's all good 😊
👋
We take summers off to regroup and do parenting stuff but we start recording again September 5th and new episodes will start airing in October! We like to have a few episodes in reserve so it's not all jammed up!
Thanks for listening... On Fridays next season we will be doing more episodes like this one and maybe you will get some new ideas to try from those episodes!
Happy listening!
Good episode and generally great podcast! Consistent with my experiences.
I am wondering if you are aware of Autistic Doctors International. I found out about it with the Neurodivergent Woman's episode (Season 3, Ep. 5) on disability with Dr. Sarah Bernard. https://autisticdoctorsinternational.com/. I also heard another podcast interview involving an Autistic Doctor in the US starting a clinic for Neurodivergent and other medically disadvantaged clients.
Today's podcast was very American centred. The whole authority ranking thing doesn't matter in my country (Australia) our Doctors are fine with being spoken to in a casual way, I've never called anyone Ma'am or Sir, Titles are used in primary and high schools Ms/Mx/Mr/Mrs by students, although there were a couple of teachers I had who we referred to by their nicknames. I've heard from other Australians that move to the US they get called rude for their lack of respect for bosses etc.
I have experienced medical bias when getting my EDS and von willebrands diagnosed as both were considered to rare to test for, until I switched doctors for one recommended to me by a friend who had EDS. I also find Doctors tend to ignore the EDS diagnosis and concentrate on my Fibro as that is easier to treat.
Would be great to hear about perimenopause and menopause for autistic people in a future episode!
This was great. Dr. Mel Houser, an autistic MD, talks about “all the things” that co-occur with autism, she would be an excellent guest (see interviews on yt and princess and the pea podcast). I have all the things. Only note is that allergies/eczema are immune
(body attacks non-body) but not autoimmune (body attacks itself). MCAS, POTS, faulty connective tissue diagnoses are complicated, and gaslighting is the most common response when seeking help:( I would love to have tips on surviving medical gaslighting after years of being told it was all “in my head” but was actually hEDS, POTS, etc. Plus there is a real communication barrier because details matter to us but not MDs. Apparently med schools teach a trope about women who bring lists (etc.) to MD appointments. Best thing to do based on sociological research is bring a white man with you. I wish I could bring a lawyer because MDs certainly don’t follow their own “due diligence” rule. If you research Dr. Houser and her All Brains Belong organization (which has created a resource about how all the things are connected), you will love her work. I’m enjoying binging your podcast very much, thank you!
I love Dr. Mel Houser!
YES. This was such an important and validating episode. And medical gaslighting is absolutely the perfect term.
As the late-dx'd mom (at 66!) of a 30YO autistic daughter, with a 95YO autistic mother, this was an excellent episode. So much resonated with me! My daughter only discovered she has EDS last winter, and also some variety of orthostatic intolerance (not sure yet if it's actually POTS). We're hoping that will help her in her efforts to get disability support, because she's been dealing with too much fatigue and pain to work more than a few hours/week.
Thank you for all of this information. I relate on so many levels. I am pretty sure my son has EDS and MCA. I am hyper mobile which is really affecting me as I age. I love that you are going to be a doula for Autistic people. I think I am super disassociated with my body and I gave birth easily. I have super high pain tolerance but I am also very in tune with my body and when things are not right. I don’t know. I don’t think I have many sensory things going on but I think it is because I am so hypo sensitive. Like I lay on my hands when I sleep or need to tuck my hands and arms under my body. My sons do that too. Is that common? What about rheumatoid arthritis? I had a lot of fertility issues but not due to polycystic ovaries I just did not make enough progesterone. My thyroid levels are always at a low 1 and I have always thought I have hypothyroidism, but I am always gaslighted. I wish more medical professionals knew about all of this. And sorry for so many posts and typos. It’s my impulsivity. I can’t always control it and I overlook a lot of my mistakes or the mistakes my phone makes. So I am sorry if my posts make you cringe Angela!
No cringing here! Love the engagement!
Oh the authority figure thing! Ugh! I think it is easy for Autistic people to not care about titles because we know that someone can be even more knowledgeable without the credential because of hyper focus. I was blown away when someone told me the difference in motivation at work between autistic people and allistic people is that allistic people are motivated by power and status. We are motivated by doing a good job. So we expose the allistic person’s insecurities. But we don’t want to take power away we just want things to honestly run better. I run into this all of the time as well! Especially when it comes to my son. I spend a lot of time in the ER and totally head but with the ER staff. And you do jot have a bad personality!!! You’re just honest and genuine. I usually just do what the dumb ER doctors say so that we can be discharged, and my son not treated. It’s hard to have a non-speaking child that has a hard time identifying what is going on. OR he is totally telling us what is going on and the stupid doctors miss it. My son had a staph infection in his nostril. He kept putting things in his nostril and the doctor wanted to look for something stuck. Then gave up and diagnosed him with sinusitis even when he had NO discharge at all. It took 3 trips to the ER for one of the doctors to realize he had a staph infection. OMG it is unreal.