Without incorporating the embodied knowledge of patients, research findings risk misrepresenting and in worst case stigmatising those they are trying to understand.
We have lived experience, insight and understanding to our condition that doctors will never gain access to through medical training as it stands to operate from right now. Where those of us who have researched our disease to the extent you and I have, learnt to advocate for ourselves, combined with making changes, doing the deep dark inner work of healing - that makes us very powerful and knowledgeable indeed. It’s only us who can uncover the pitfalls, keep adjusting our sails and navigate our way forward through the turbulent seas of the vast ocean. Surely, we are in places and spaces no man has ever been before? Medically trained or otherwise.
Thank you so much on the light you have shone on all this today and for the way you articulate all you do in such an inclusive, very well informed and highly educated way🙏❤️🔥
There is a real need for doctors (and all collectively) to become aware of and understand that we can heal ourselves and that it is ok to feel how we feel. We are capable of feeling pain, disappointment, sadness and grief (& all manner and range of emotions). No one told me that you can heal a broken heart. Yet when I look back at this one thing in my life and see what a difference that would have made to what came next…
Absolutely🙏 I’d love to see more research on the emotional aspect of our health and the part this plays/impact this has on our physical and mental health. I’ve seen (only) one neurologist site that an “inability to regulate emotions” is one root cause of migraine disease (alongside brain abnormality). It was just the thing I needed to take my healing further and make space in my day (everyday for a while) to learn to regulate my emotions. It was, of course, a hell of a journey. Though I haven’t experienced pain to a severe/agonising extent since and later that same year I could function through attack (to some extent) for the first time.
I do personally know several people in the health care profession who have chronic illnesses and have read articles about others, which gives me hope that some of this will be implemented from the inside, especially with the rapidly rising numbers of people with chronic illnesses. The increase in remote work may also allow more people with chronic illnesses to have a say in research as well. I don’t think embodied knowledge will make its way into mainstream research unless someone with it is part of the research team designing the study.
I also think embodied would drastically change autism research. Actually, maybe it is the change we’re seeing now.
Yes, I’m seeing more and more patient involvment in research which will create embodied knowledge… I do think we have a long way to go though, but yes, changes are happening 🌸
Doctors could only possibly become more aware of our embodied knowledge and experience by taking an interest. As I’m sure it is in all the conditions you have mentioned, it is well documented here in the uk that there is no medical interest in migraine disease. Despite it being the worlds most common neurological disorder as well as the 2nd leading cause of disability (1st in women under 50).
When you say ‘take an interest’ do you mean talking to their patients, asking open ended questions etc? Or are there other ways of taking an interest? And yes! Migraine is among the least understood too!
Absolutely, that would be one way. But from what I understand (and of course this doesn’t mean I’m right or correct in all cases, it is what I’ve come to see), for a medical professional to learn about misunderstood disease and illness (because of their lack of training) they have to independently research it. With the mounting pressure, stress and shortages within the healthcare system where is the space for this? The majority of those who do (again from what I have researched), tend to have an outside interest because they either live with it too or knew someone who did (for example their mother and grew up with the severe and debilitating impact it had on their life).
Ah yes, I see this tendency too. That they need a private/personal interest i order to truly research and understand our lived experience. I also think that memoirs written by patients should be on their curriculum.
I’d like to see more memoirs on this arena, if you have any recommendations please share.
I’ve just finished reading Finding Peace with devastating illness (endo) by Amy Corfelli - highly recommend to all chronic illness warriors.
Last read:
10, a survival guide to living with migraine - shocked to find lack of publisher interest due to the non-typical happy ending….we need so many more stories of all natures shared. I feel there is a real market and need for it and this need is growing.
We have lived experience, insight and understanding to our condition that doctors will never gain access to through medical training as it stands to operate from right now. Where those of us who have researched our disease to the extent you and I have, learnt to advocate for ourselves, combined with making changes, doing the deep dark inner work of healing - that makes us very powerful and knowledgeable indeed. It’s only us who can uncover the pitfalls, keep adjusting our sails and navigate our way forward through the turbulent seas of the vast ocean. Surely, we are in places and spaces no man has ever been before? Medically trained or otherwise.
So true!!
Thank you so much on the light you have shone on all this today and for the way you articulate all you do in such an inclusive, very well informed and highly educated way🙏❤️🔥
Thank you so much, Amber 🌸❤️🌺
There is a real need for doctors (and all collectively) to become aware of and understand that we can heal ourselves and that it is ok to feel how we feel. We are capable of feeling pain, disappointment, sadness and grief (& all manner and range of emotions). No one told me that you can heal a broken heart. Yet when I look back at this one thing in my life and see what a difference that would have made to what came next…
I also think there should be more space and knowledge of the myriad ways our emotions can manifest and that it is all ok.
Absolutely🙏 I’d love to see more research on the emotional aspect of our health and the part this plays/impact this has on our physical and mental health. I’ve seen (only) one neurologist site that an “inability to regulate emotions” is one root cause of migraine disease (alongside brain abnormality). It was just the thing I needed to take my healing further and make space in my day (everyday for a while) to learn to regulate my emotions. It was, of course, a hell of a journey. Though I haven’t experienced pain to a severe/agonising extent since and later that same year I could function through attack (to some extent) for the first time.
I didn’t know there was a name for this!
I do personally know several people in the health care profession who have chronic illnesses and have read articles about others, which gives me hope that some of this will be implemented from the inside, especially with the rapidly rising numbers of people with chronic illnesses. The increase in remote work may also allow more people with chronic illnesses to have a say in research as well. I don’t think embodied knowledge will make its way into mainstream research unless someone with it is part of the research team designing the study.
I also think embodied would drastically change autism research. Actually, maybe it is the change we’re seeing now.
Yes, I’m seeing more and more patient involvment in research which will create embodied knowledge… I do think we have a long way to go though, but yes, changes are happening 🌸
Doctors could only possibly become more aware of our embodied knowledge and experience by taking an interest. As I’m sure it is in all the conditions you have mentioned, it is well documented here in the uk that there is no medical interest in migraine disease. Despite it being the worlds most common neurological disorder as well as the 2nd leading cause of disability (1st in women under 50).
When you say ‘take an interest’ do you mean talking to their patients, asking open ended questions etc? Or are there other ways of taking an interest? And yes! Migraine is among the least understood too!
Absolutely, that would be one way. But from what I understand (and of course this doesn’t mean I’m right or correct in all cases, it is what I’ve come to see), for a medical professional to learn about misunderstood disease and illness (because of their lack of training) they have to independently research it. With the mounting pressure, stress and shortages within the healthcare system where is the space for this? The majority of those who do (again from what I have researched), tend to have an outside interest because they either live with it too or knew someone who did (for example their mother and grew up with the severe and debilitating impact it had on their life).
Ah yes, I see this tendency too. That they need a private/personal interest i order to truly research and understand our lived experience. I also think that memoirs written by patients should be on their curriculum.
I’d like to see more memoirs on this arena, if you have any recommendations please share.
I’ve just finished reading Finding Peace with devastating illness (endo) by Amy Corfelli - highly recommend to all chronic illness warriors.
Last read:
10, a survival guide to living with migraine - shocked to find lack of publisher interest due to the non-typical happy ending….we need so many more stories of all natures shared. I feel there is a real market and need for it and this need is growing.
I recently finished Esmé Wang’s Collected Schizophrenias. I loved it!