🙏🏻 - I went rouge when the judge said he needed some clarification at the end of my hearing. We actually had what felt like a human to human exchange, no tables dictating the outcome. At that moment, my attorney gave me a look and told me in no uncertain terms to zip it. I was faced with appearing evasive or having something that hadn't been carefully crafted used against me. I think I might have started my response by pointing out the dilemma his question had created.
That’s funny - my attorney who is very lovely basically made it clear to me that I should not offer up information that isn’t asked of me. And sometimes when you start engaging in casual banter, you inadvertently say something “incriminating.” I know I’m prone to saying too much (you’ve seen the length of my posts, lol). But your turning the judge’s question around is the tactic I used to get out of jury duty many years ago. My husband said they don’t want people on the jury who think too much 🙃.
#2. “How much should I assume that the judge or the vocational coordinator who will also be on the call knows about the actual demographics of Long COVID?
Because it’s people between ages 25-50 who are most likely to develop Long COVID. Is there any opportunity here to educate the judge?”
“I hear what you’re saying. Unfortunately, no. That won’t go over well. Plus, they never veer from what their tables tell them.”
It’s becoming increasingly clear to me that in the systems of our own creation, there are limited opportunities for education.
It remains to be the case that migraine disease is the number 1 most disabling disease in women. And yet in legal terms and cases, we will not veer outside of what the tables say.
This post feels like a level up in your communication Amy (for which I remain both forever grateful and in awe of you shining your light in the way that you do and being of service to humanity in this way). I’ve written what I feel like is a level up post (to be shared on my 6 year anniversary next month). and one thing we are being encouraged to be the one to educate our healthcare professionals of the disease we are we specifically seeing them about in the first place.
It looks like this piece is going to end with me not seeing this as my responsibility. I can’t speak on behalf of other chronic illness warriors but I stand firm in choosing to only take action on the (relentless) research i have done to use this knowledge, insight, information and understanding so that I can implement change to create health in my own life. Then share the aforementioned with my community. It is not my responsibility to educate those in the systems of our own creation where the majority of whom (I appreciate not everyone) refuse to be educated by the bottom of the pile people.
Thank you so much for stepping into your power, speaking your truth and sharing all that needs to be unearthed. For me, it’s a taken a hell of an evolution in my being to be able to do that. I’d be intrigued to know, have you found the same?
Amber, I feel your sentiments here to my core. There was a point in the last four years (probably two years in) where I was so DONE with educating healthcare professionals. I was one of the first patients seen at my local long COVID clinic in late 2020 and most of my first appointment (which lasted well over an hour) was the doctor and the main administrator of the new clinic grilling me around what I knew that they didn’t. A few months later, I stopped going there altogether because I realized the non-clinic docs I found after diligent searches were leaps and bounds more informed than the staff at the LC clinic.
Part of the problem is that managed care leaves no time for doctors to read up on new research. So I don’t entirely blame the docs. But it’s also not my responsibility, as you’ve said, to take on the burden of education while I’m burdened by the illness and the huge amount of work involved in applying for disability.
Thank you as always for your cheerleading of my work here - we are in a definite mutual admiration society! I very much look forward to your “level up” post. It’s funny you identified this post of mine as such. I feel like a bunch of my earlier posts were these kinds of societal observations and analysis. The truth is, they take a lot of work and emotional energy to write (this post took me all week). The thought of trying to produce posts like this every week or even once a month drains me; I’ll reserve the energy for when I feel like I have something more substantive to say. For now, I’m happy to be the Queen of links 👑😆.
Recently finished a bus tour. Half the bus came down with a cold … you could hear the cough progressing through the bus with more and more people. It got me and I was the ONLY person wearing a mask beside the sweet immune compromised lady who put hers on at the first cough. If the first sick person had masked … well, we all went out for dinner the first night so it probably would have spread then, but if those people had then masked … but with your news I wonder if there’s any point in complaining to the company. Of course🫤
Oops hit return and an emoji too soon. Of course I probably should have masked at the first cough also, but I pegged her as a smoker (she has the rasp) and she declared on the last day that she was sick. Who knows if any of them tested for covid. I did, twice, and fortunately it’s a cold but I had to reduce my activities.
I forget where I was recently but the second someone started coughing, I whipped out my mask. I don’t feel equipped to interpret anyone’s cough so I just don’t take the chance. But I’m sorry you caught the cold. I’ll never look at a common cold the same way after this pandemic 🥺
So much stress, Amy! I could feel it as I was reading. Your shining light as an advocate was as bright as ever. Thank you for educating us through the fog. Wishing you luck with your hearing.
Thanks, Rosemary! It definitely helped my stress a bit to get all this writing out of me. I fell asleep more easily last night too. Thanks for your support.
Best of luck with the disability hearing, and I share your complete outrage with the NC fascism on the march. There is no doubt what republicans are doing between this, women’s bodily autonomy, stepping on the accelerator as we careen towards climate disaster, insurrectionism and voter suppression, racism - they have shown their cards quite plainly. That so many people support such anti-American activities and policies is even more outrageous.
Well the mask ban is horrifying. I have no intention of changing my mask behavior, regardless of the legality... Just another kind of law I need to hypothetically ignore to live my life comfortably, for example if I'm in a US state that's tried to make trans people functionally illegal.
Thank you so much, Rey. It is really horrifying what’s happening in this country. Especially if you are at the intersections of multiple targeted or dismissed identities 😔
Thank you so much for every part of this post. I'm so sorry you have to deal with all that hassle just to get the disability benefits you deserve. I could write a novel on how shitty our social programs are and how you're treated like you're lying from the get-go. I can't even adequately express my outrage about the mask bans certain states are trying to employ either. After all those asshats whined about having to wear one for so long, now they're trying to ban them?! I didn't think I could feel more left behind than I felt in 2020 and 2021, but I've actually felt that way more these last couple of years with nearly everyone not giving a sh*t anymore. I lost a friend because of my stance on what's happening in Palestine too, especially as a disabled person, so what you posted made me feel a lot better. Appreciate you ❤️
Thank you, Jackie. I’m really glad we “met” through Substack and that we’re in community with each other now - especially as we continue to be pushed to the margins of society 🙁
Oh I def connected with the feeling of anger. To highlight the top 2 that had anger surging up through my body (of course the rest of the post ignited the same with these 2 being particularly personal to me):
#1. this is how they separate the malingerers and frauds from the truly disabled. The more detail you give, the more plausible your disability sounds.“
Are you freakin’ kidding me!?!
It took me 4 years to be able to answer the question “what do you do all day?” When I was scrutinised for not working or having children (y’know…not playing my part in society, proving my worth, adding value of the productivity kind).
It was also only from this time onward that I was able to communicate that I’d been living with pain so severe and agonising (for 24 years by this point) that it was known to be 50% more painful than childbirth, kidney stones and gunshot wound.
Because I had very basic and minimal insight into the disability system over here in the uk, I chose not to register myself as disabled and put myself through that level of increased stress and turmoil on top of what I was already facing (pretty much on my own, considered a single person with mortgage etc).
I am glad I chose the continued path of making changes with wellness as my goal. Whilst recognising I had many privileges that afforded me such a choice and ability to make this decision (as a white British woman with access to mental health support - sourced myself - which was a big part of me being able to educate myself in the way I have and make the pain staking decisions I did).
I know! It’s quite angering, this idea that we’re just somehow being lazy. To be fair, I don’t think the attorney was suggesting that they’ll think I’m malingering, and there are definitely people who try to commit fraud with these systems (though I’m honestly perplexed as to HOW, given the number of docs I’ve had to see and tests I’ve had to have to document my illness - how do the fraudsters find docs to attest to their fake illnesses? Unless the docs are also fraudsters, which I guess is possible. It just seems like much more work than just getting a JOB, lol).
Like you, I keep saying I don’t really want these benefits, because I’d much rather bet on ME and my recovery efforts. But for the meantime, I have to play the game by their rules 🤷🏼♀️.
It’s something that I wonder myself…are there people playing the system or is this down to our lack of understanding of what health is, consists of and looks like? I hear often a belief around patients wasting doctors time and making it all up but the reality of invisible illness and how rife and common it is painting me a very different picture.
You tell ‘em Amy! Once an advocate, always an advocate. Good luck at your hearing!
Thanks for reading as always and for your encouragement!
Good luck on your hearing! Here’s hoping the judge really hears you!
Thanks so much, Cassie! Appreciate you taking the time to read this post.
Reading (and supporting to some small degree) is truly my pleasure. I've been there. My heart is with you.
Thank you 🥹
🙏🏻 - I went rouge when the judge said he needed some clarification at the end of my hearing. We actually had what felt like a human to human exchange, no tables dictating the outcome. At that moment, my attorney gave me a look and told me in no uncertain terms to zip it. I was faced with appearing evasive or having something that hadn't been carefully crafted used against me. I think I might have started my response by pointing out the dilemma his question had created.
We'll all be there with you! Best wishes!
That’s funny - my attorney who is very lovely basically made it clear to me that I should not offer up information that isn’t asked of me. And sometimes when you start engaging in casual banter, you inadvertently say something “incriminating.” I know I’m prone to saying too much (you’ve seen the length of my posts, lol). But your turning the judge’s question around is the tactic I used to get out of jury duty many years ago. My husband said they don’t want people on the jury who think too much 🙃.
Thanks for reading and for your support!
#2. “How much should I assume that the judge or the vocational coordinator who will also be on the call knows about the actual demographics of Long COVID?
Because it’s people between ages 25-50 who are most likely to develop Long COVID. Is there any opportunity here to educate the judge?”
“I hear what you’re saying. Unfortunately, no. That won’t go over well. Plus, they never veer from what their tables tell them.”
It’s becoming increasingly clear to me that in the systems of our own creation, there are limited opportunities for education.
It remains to be the case that migraine disease is the number 1 most disabling disease in women. And yet in legal terms and cases, we will not veer outside of what the tables say.
This post feels like a level up in your communication Amy (for which I remain both forever grateful and in awe of you shining your light in the way that you do and being of service to humanity in this way). I’ve written what I feel like is a level up post (to be shared on my 6 year anniversary next month). and one thing we are being encouraged to be the one to educate our healthcare professionals of the disease we are we specifically seeing them about in the first place.
It looks like this piece is going to end with me not seeing this as my responsibility. I can’t speak on behalf of other chronic illness warriors but I stand firm in choosing to only take action on the (relentless) research i have done to use this knowledge, insight, information and understanding so that I can implement change to create health in my own life. Then share the aforementioned with my community. It is not my responsibility to educate those in the systems of our own creation where the majority of whom (I appreciate not everyone) refuse to be educated by the bottom of the pile people.
Thank you so much for stepping into your power, speaking your truth and sharing all that needs to be unearthed. For me, it’s a taken a hell of an evolution in my being to be able to do that. I’d be intrigued to know, have you found the same?
Amber, I feel your sentiments here to my core. There was a point in the last four years (probably two years in) where I was so DONE with educating healthcare professionals. I was one of the first patients seen at my local long COVID clinic in late 2020 and most of my first appointment (which lasted well over an hour) was the doctor and the main administrator of the new clinic grilling me around what I knew that they didn’t. A few months later, I stopped going there altogether because I realized the non-clinic docs I found after diligent searches were leaps and bounds more informed than the staff at the LC clinic.
Part of the problem is that managed care leaves no time for doctors to read up on new research. So I don’t entirely blame the docs. But it’s also not my responsibility, as you’ve said, to take on the burden of education while I’m burdened by the illness and the huge amount of work involved in applying for disability.
Thank you as always for your cheerleading of my work here - we are in a definite mutual admiration society! I very much look forward to your “level up” post. It’s funny you identified this post of mine as such. I feel like a bunch of my earlier posts were these kinds of societal observations and analysis. The truth is, they take a lot of work and emotional energy to write (this post took me all week). The thought of trying to produce posts like this every week or even once a month drains me; I’ll reserve the energy for when I feel like I have something more substantive to say. For now, I’m happy to be the Queen of links 👑😆.
Well done. Well said. Your aspirations do you credit.
Thanks for reading, Michael, and for your words of support.
Recently finished a bus tour. Half the bus came down with a cold … you could hear the cough progressing through the bus with more and more people. It got me and I was the ONLY person wearing a mask beside the sweet immune compromised lady who put hers on at the first cough. If the first sick person had masked … well, we all went out for dinner the first night so it probably would have spread then, but if those people had then masked … but with your news I wonder if there’s any point in complaining to the company. Of course🫤
Oops hit return and an emoji too soon. Of course I probably should have masked at the first cough also, but I pegged her as a smoker (she has the rasp) and she declared on the last day that she was sick. Who knows if any of them tested for covid. I did, twice, and fortunately it’s a cold but I had to reduce my activities.
I forget where I was recently but the second someone started coughing, I whipped out my mask. I don’t feel equipped to interpret anyone’s cough so I just don’t take the chance. But I’m sorry you caught the cold. I’ll never look at a common cold the same way after this pandemic 🥺
That is true. The sweet lady certainly didn’t take any chances. It’d be better if the coughing person masked up though.
100%
So much stress, Amy! I could feel it as I was reading. Your shining light as an advocate was as bright as ever. Thank you for educating us through the fog. Wishing you luck with your hearing.
Thanks, Rosemary! It definitely helped my stress a bit to get all this writing out of me. I fell asleep more easily last night too. Thanks for your support.
Best of luck with the disability hearing, and I share your complete outrage with the NC fascism on the march. There is no doubt what republicans are doing between this, women’s bodily autonomy, stepping on the accelerator as we careen towards climate disaster, insurrectionism and voter suppression, racism - they have shown their cards quite plainly. That so many people support such anti-American activities and policies is even more outrageous.
The U.S. is becoming unrecognizable, isn’t it? At least according to its founding tenets. Thank you for reading and for your support.
Well the mask ban is horrifying. I have no intention of changing my mask behavior, regardless of the legality... Just another kind of law I need to hypothetically ignore to live my life comfortably, for example if I'm in a US state that's tried to make trans people functionally illegal.
Thank you so much for sharing this good information, and good luck with your benefits. Crossing my fingers that everything goes smoothly.
Thank you so much, Rey. It is really horrifying what’s happening in this country. Especially if you are at the intersections of multiple targeted or dismissed identities 😔
Amy, I am pulling for you bigtime over here. Remember to lean on those of us who really care about you and the life you're living.
Thank you so much, Robin 🧡
Thank you so much for every part of this post. I'm so sorry you have to deal with all that hassle just to get the disability benefits you deserve. I could write a novel on how shitty our social programs are and how you're treated like you're lying from the get-go. I can't even adequately express my outrage about the mask bans certain states are trying to employ either. After all those asshats whined about having to wear one for so long, now they're trying to ban them?! I didn't think I could feel more left behind than I felt in 2020 and 2021, but I've actually felt that way more these last couple of years with nearly everyone not giving a sh*t anymore. I lost a friend because of my stance on what's happening in Palestine too, especially as a disabled person, so what you posted made me feel a lot better. Appreciate you ❤️
Thank you, Jackie. I’m really glad we “met” through Substack and that we’re in community with each other now - especially as we continue to be pushed to the margins of society 🙁
Oh I def connected with the feeling of anger. To highlight the top 2 that had anger surging up through my body (of course the rest of the post ignited the same with these 2 being particularly personal to me):
#1. this is how they separate the malingerers and frauds from the truly disabled. The more detail you give, the more plausible your disability sounds.“
Are you freakin’ kidding me!?!
It took me 4 years to be able to answer the question “what do you do all day?” When I was scrutinised for not working or having children (y’know…not playing my part in society, proving my worth, adding value of the productivity kind).
It was also only from this time onward that I was able to communicate that I’d been living with pain so severe and agonising (for 24 years by this point) that it was known to be 50% more painful than childbirth, kidney stones and gunshot wound.
Because I had very basic and minimal insight into the disability system over here in the uk, I chose not to register myself as disabled and put myself through that level of increased stress and turmoil on top of what I was already facing (pretty much on my own, considered a single person with mortgage etc).
I am glad I chose the continued path of making changes with wellness as my goal. Whilst recognising I had many privileges that afforded me such a choice and ability to make this decision (as a white British woman with access to mental health support - sourced myself - which was a big part of me being able to educate myself in the way I have and make the pain staking decisions I did).
2nd reflection to continue in a separate post.
I know! It’s quite angering, this idea that we’re just somehow being lazy. To be fair, I don’t think the attorney was suggesting that they’ll think I’m malingering, and there are definitely people who try to commit fraud with these systems (though I’m honestly perplexed as to HOW, given the number of docs I’ve had to see and tests I’ve had to have to document my illness - how do the fraudsters find docs to attest to their fake illnesses? Unless the docs are also fraudsters, which I guess is possible. It just seems like much more work than just getting a JOB, lol).
Like you, I keep saying I don’t really want these benefits, because I’d much rather bet on ME and my recovery efforts. But for the meantime, I have to play the game by their rules 🤷🏼♀️.
It’s something that I wonder myself…are there people playing the system or is this down to our lack of understanding of what health is, consists of and looks like? I hear often a belief around patients wasting doctors time and making it all up but the reality of invisible illness and how rife and common it is painting me a very different picture.