Your show is usually very helpful and informative.This episode sucked. Please reconsider having ignorant, ableist guests like Katie and Andrew on your shows in the future. Soundbites like "we all have the same 24 hrs in a day" or "some people need to be pushed" said to an audience with variable degrees of disability shows a shocking lack of understanding of EDS and the commorbid health issues that impact us as a population. They're lucky to have minimal symptoms and the privilege to get testing that is too often denied to many of us by the time we piece together that we have invisible vulnerabilities. A lot of us with EDS also have POTS, MCAS, Chiari malformations... This is not a matter of will power or work ethic. A lot of us were athletes as younger people and grieve the fact that we can't do what we once could after years of pushing our limits and unknowingly causing our bodies harm because of the variable nature of EDS and how little the medical world was taught about us in med school. Toxic positivity isn't helpful.
I don't know what you heard, but I heard that at the moment they are doing good, but had really struggled at various times in their life. I know I have always had the mantra of I have to keep moving, it hurts if I do, but it hurts more if I don't. I struggled with piriformis syndrome for almost 2 years and at times could hardly walk due to pain, but I kept trying to find different exercises and movement and now overall it is gone, unless I do something to cause a flare, but it was a long slow process. Yes, there is a grieving process. I can't do what I did 5, 10, 20 or 50 years ago and I have had to accept that, but I can always do something. I am just slower at what I do.
Thank you for the feedback. Everyone's journey is different and unfortunately no single thing works for everyone. Ehlers-Danlos Syndromes and HSD are incredibly heterogenous conditions which makes diagnosis and management so challenging. But we are making progress so stay tuned!
And yes, I have had to grieve too. It is hard. Even though I am overall doing much better than before, there are things my friends (my age) can do that I cannot. That is why I have addressed grief multiple times on the podcast. Thank you for your message @theprairierose4613!
Your show is usually very helpful and informative.This episode sucked. Please reconsider having ignorant, ableist guests like Katie and Andrew on your shows in the future. Soundbites like "we all have the same 24 hrs in a day" or "some people need to be pushed" said to an audience with variable degrees of disability shows a shocking lack of understanding of EDS and the commorbid health issues that impact us as a population. They're lucky to have minimal symptoms and the privilege to get testing that is too often denied to many of us by the time we piece together that we have invisible vulnerabilities. A lot of us with EDS also have POTS, MCAS, Chiari malformations... This is not a matter of will power or work ethic. A lot of us were athletes as younger people and grieve the fact that we can't do what we once could after years of pushing our limits and unknowingly causing our bodies harm because of the variable nature of EDS and how little the medical world was taught about us in med school. Toxic positivity isn't helpful.
I don't know what you heard, but I heard that at the moment they are doing good, but had really struggled at various times in their life. I know I have always had the mantra of I have to keep moving, it hurts if I do, but it hurts more if I don't. I struggled with piriformis syndrome for almost 2 years and at times could hardly walk due to pain, but I kept trying to find different exercises and movement and now overall it is gone, unless I do something to cause a flare, but it was a long slow process.
Yes, there is a grieving process. I can't do what I did 5, 10, 20 or 50 years ago and I have had to accept that, but I can always do something. I am just slower at what I do.
Thank you for the feedback. Everyone's journey is different and unfortunately no single thing works for everyone. Ehlers-Danlos Syndromes and HSD are incredibly heterogenous conditions which makes diagnosis and management so challenging. But we are making progress so stay tuned!
And yes, I have had to grieve too. It is hard. Even though I am overall doing much better than before, there are things my friends (my age) can do that I cannot. That is why I have addressed grief multiple times on the podcast. Thank you for your message @theprairierose4613!