What an incredible journey you have been on. I too have POTS amongst other autoimmune diseases and I am so sorry you been challenged with fighting for a diagnosis- and treatment.
I can relate to some of this as after I recovered from COVID in 2022, I had debilitating fatigue & full body joint pain which led me to 3 different Rheumatologists. After piles of lab tests over the course of 6 months, the diagnosis was long Covid.
In 2023, POTS symptoms began & severity of symptoms waxed & waned. After passing out at the gym and smashing my face on a weight plate this year, a Cardiologist confirmed POTS. After reading this, I can’t help but wonder what (other) affects COVID has had on (us).
It is amazing how many people share common symptoms with me these days. It's actually overwhelming, and I'm so sorry you're experienced it. The gym scenario scares me to death!
What to say? This is crisp, deftly written, and heartbreaking storytelling. Sharing of suffering. Our broken systems are breaking us again and again, and how brave you are to be this vulnerable and honest. PTSD has run rampant through my family, from my grandmother to my children, hobbling everything from health, vocation, and even creativity. Bridget, I grieve with you, and thank you for opening your guts on this one, along with many other brilliant essays.
I’m so sorry you have gone through and are still experiencing this. I understand it, have been facing a version of it for many years. My hope for you is recognition, relief, and approval for disability.
Thank you, Sheri. I hate that you *know about this too. There are so many of us and until it was me, I didn't really care. Thank you for your empathy and hope.
One of the things I love about Substack is that we can form a range of connections of different sorts and strengths over time or immediately. I'm so happy to share my hope with you!
Bridget - I'm so sorry you're going through this. I cannot imagine the burden of frustration you've carried in addition to the burden of illness. I hope finally uncorking the bottle of silence about your struggle has loosened the mental stress a bit. I have no words of wisdom, but I do have words of support.
I appreciate this comment so much. There is definitely something to opening up about all of this that helps in some small way. To not feel alone is healing, I'm and of itself. Thank you for reading and for being ‘in this' with me. 🖤
I retired from the SSA disability program in 2022. My last 14 years were spent in an Office of Hearings and Appeals field office, and prior to that I served for 17 years in the Disability Quality Branch( QA) in the Dallas Regional Office.
You have a complex impairment and require the best disability attorney you can muster, especially one who specializes in impairments like yours. There are many people under 50 who qualify for disability based on many impairments, some quite complex like yours.
The claimant must prove that they are unable to perform any type of gainful work activity with consideration to their age, education, and prior work activity.
I don’t know where you live but the quality of disability representation can vary significantly geographically.
Some cities/ areas have a high level of expertise available to the public( which our administrative law judges refer to as “the bar”). And some areas the expertise is lower. Some people turn to national disability law firms which handle claims in different states.
My advice is this:
1. Find the best lawyer you can. Make sure they are a member of the National Association of Social Security Representatives.
Try to find the best local rep you can, but don’t hesitate to seek one outside of your community willing to take your case.
Your treating physician must be able to fully and fairly document the history and progression of your impairment.. i cannot stress how important this is.
You also need to inform your local congressional representative so they can open a case inquiry to SSA in your behalf.
Disability representation is almost always done on a fee contingent basis. They are not paid unless you are successful.
Thank you for this thoughtfulness and advice, Frederick. I have just secured good representation— and have two doctors willing to share their notes and opinions. This is a long haul and I am thankful not to be alone in it anymore.
Amidst the grief and loss, I hope you're finding moments of pleasure, more blue bottle treasures, a serene flow state where your writing is magic and your thoughts have wings. You are so strong. Thanks for putting yourself out there for us to see.
It feels at times we are set up to fail over and over again. Sort of like a cruel joke. So many people just let go. Too tired or "broken" to even dream of better days. Instead they go through the motions or worse, they numb them. There is no shame in either and sometimes those options call to us in the darkest times. But deep inside of many of us is a burning deisre and belief that this is not what life is meant to be like. A world full of survivors, surviving in solitude because they feel to broken to fit in or sit quietly. Some of us have a fierce knowing that there is an abundance of joy and happiness to be had and it is that "knowing" that makes us show up and do the hard and exhausting things until we create what we desire. You are a warrior. You are a change maker. Your voice has the power to change the world and that is why you show up even on the bad days. Stay strong friend 💖
Bridget, I don’t know you, but I am you. 💔 Years living in fight or flight trying to save my qualifier have destroyed my nervous system. Make a casserole out of long Covid, EBV, POTS, PPPD (yes I have that MF-er too), guilt, shame and more. It sucks. There are no answers or cures…yet. Thank you for sharing. You are not alone. I am not alone.
I was diagnosed with GAD for what I know was actually medical PTSD — witnessing your 12-year-old grandson go into cardiac arrest and not be revived for 12 minutes will do that to you, not to mention a long history of medical snafus and errors before that. They tried to put me on gabapentin and label it “anxiety disorder.” Like you, I’m a clinician — I know what I have. What I needed was a short-acting anti-anxiety med for doctor or dentist visits. But no — long-term gabapentin. 🙄 I didn’t take it, never went back, won’t go again. In my experience, I’m often teaching the so-called professional.
I’ve avoided COVID “like the plague” because on March 3, 2020, something deep inside me said: You cannot afford to get this. I’ve masked and stayed vaxxed ever since. So far, I’m a NOVID.
The vagus nerve is huge — the more we can learn about it and work on vagal tone, the better. Easier said than done. Every time I get momentum with my “stay-healthy” program, something stops me cold. Last week I was up to 7,000 steps a day, wearing a weight vest for five minutes five times a week — then a combination of massage and HSV flare set off extreme sciatic pain. Haven’t been able to walk more than around the house for a week.
I’m immunocompromised, EBV-positive (like most of us), and I know COVID can reactivate it. I’m grateful for the privilege of being retired so I can protect myself this much.
Right now, I’m sitting in a lawn chair with my feet in the grass — earthing. No idea if it’s “real,” but it feels good and is supposed to reduce inflammation.
Meanwhile, the stress load — losing three family members, witnessing a grandchild’s cardiac arrest, family estrangement — keeps my system on high alert. For me, stress shows up in severe GI attacks. No clear cause other than gallstones. And now, because of the scan that found them, they want a CT of my lungs to check on some scarring.
Just commiserating. I know how hard this is, and in your position it’s even harder. You have a young child at home, an older one incarcerated, and you’ve been sober only a few years. My heart goes out to you. You are a warrior. We’ve got this.
It's so hard (near impossible) to find a medical professional that is willing to look outside the box, to listen to what you know about your own body. I think it will be getting only worse with this administration. "When a human sits too long in a corrosive bath of cortisol and adrenaline, inflammation spreads and cell destruction speeds up." I hear that. I know that. Thank you for sharing, I don't know what to say to make it better (my first reaction). I know there is nothing I can say. But, I hear you.
You are so amazingly strong and resilient ... and, I know, exhausted and overwhelmed and frustrated. I am so glad (and relieved) you are doing 'better' but I have witnessed the struggle and I know it continues. I wish so many things - that there were answers, cures, treatments, more support, more understanding, less dismissal, less arrogance in the health care field, more awareness in (and of) 'the system' ... and my personal pet peeve, that the insurance companies and big pharma were not the drivers of so many 'decisions' so that they profit.
As you know, our family has had a similar journey with our daughter’s diagnosis of many of the same conditions. It is heartbreaking and rage-making and exhausting…. I am so grateful that we finally found a medical team who gets it. She too had doctors who told her that it was all in her head and she needed treatment for anxiety, depression or whatever. While we are fans of therapy, those comments missed the point of her very real disability. I hope you continue to find medical folks to support you.
What an incredible journey you have been on. I too have POTS amongst other autoimmune diseases and I am so sorry you been challenged with fighting for a diagnosis- and treatment.
I can relate to some of this as after I recovered from COVID in 2022, I had debilitating fatigue & full body joint pain which led me to 3 different Rheumatologists. After piles of lab tests over the course of 6 months, the diagnosis was long Covid.
In 2023, POTS symptoms began & severity of symptoms waxed & waned. After passing out at the gym and smashing my face on a weight plate this year, a Cardiologist confirmed POTS. After reading this, I can’t help but wonder what (other) affects COVID has had on (us).
- Thank you for sharing your story. ❤️
It is amazing how many people share common symptoms with me these days. It's actually overwhelming, and I'm so sorry you're experienced it. The gym scenario scares me to death!
What to say? This is crisp, deftly written, and heartbreaking storytelling. Sharing of suffering. Our broken systems are breaking us again and again, and how brave you are to be this vulnerable and honest. PTSD has run rampant through my family, from my grandmother to my children, hobbling everything from health, vocation, and even creativity. Bridget, I grieve with you, and thank you for opening your guts on this one, along with many other brilliant essays.
Oh, the crush it is to creativity. That statement really hit me. Thank you for your connection and realness, every time. Much love back to you.
I’m so sorry you have gone through and are still experiencing this. I understand it, have been facing a version of it for many years. My hope for you is recognition, relief, and approval for disability.
Thank you, Sheri. I hate that you *know about this too. There are so many of us and until it was me, I didn't really care. Thank you for your empathy and hope.
One of the things I love about Substack is that we can form a range of connections of different sorts and strengths over time or immediately. I'm so happy to share my hope with you!
That really has been the coolest part of this entire platform!
Bridget - I'm so sorry you're going through this. I cannot imagine the burden of frustration you've carried in addition to the burden of illness. I hope finally uncorking the bottle of silence about your struggle has loosened the mental stress a bit. I have no words of wisdom, but I do have words of support.
I appreciate this comment so much. There is definitely something to opening up about all of this that helps in some small way. To not feel alone is healing, I'm and of itself. Thank you for reading and for being ‘in this' with me. 🖤
I retired from the SSA disability program in 2022. My last 14 years were spent in an Office of Hearings and Appeals field office, and prior to that I served for 17 years in the Disability Quality Branch( QA) in the Dallas Regional Office.
You have a complex impairment and require the best disability attorney you can muster, especially one who specializes in impairments like yours. There are many people under 50 who qualify for disability based on many impairments, some quite complex like yours.
The claimant must prove that they are unable to perform any type of gainful work activity with consideration to their age, education, and prior work activity.
I don’t know where you live but the quality of disability representation can vary significantly geographically.
Some cities/ areas have a high level of expertise available to the public( which our administrative law judges refer to as “the bar”). And some areas the expertise is lower. Some people turn to national disability law firms which handle claims in different states.
My advice is this:
1. Find the best lawyer you can. Make sure they are a member of the National Association of Social Security Representatives.
Try to find the best local rep you can, but don’t hesitate to seek one outside of your community willing to take your case.
Your treating physician must be able to fully and fairly document the history and progression of your impairment.. i cannot stress how important this is.
You also need to inform your local congressional representative so they can open a case inquiry to SSA in your behalf.
Disability representation is almost always done on a fee contingent basis. They are not paid unless you are successful.
Thank you for this thoughtfulness and advice, Frederick. I have just secured good representation— and have two doctors willing to share their notes and opinions. This is a long haul and I am thankful not to be alone in it anymore.
If you have any questions about the disability process feel free to ask.
Thank you!
Amidst the grief and loss, I hope you're finding moments of pleasure, more blue bottle treasures, a serene flow state where your writing is magic and your thoughts have wings. You are so strong. Thanks for putting yourself out there for us to see.
How am I just seeing this comment? I guess I needed it today. Thank you becuz it was a tough weekend. 🖤
It feels at times we are set up to fail over and over again. Sort of like a cruel joke. So many people just let go. Too tired or "broken" to even dream of better days. Instead they go through the motions or worse, they numb them. There is no shame in either and sometimes those options call to us in the darkest times. But deep inside of many of us is a burning deisre and belief that this is not what life is meant to be like. A world full of survivors, surviving in solitude because they feel to broken to fit in or sit quietly. Some of us have a fierce knowing that there is an abundance of joy and happiness to be had and it is that "knowing" that makes us show up and do the hard and exhausting things until we create what we desire. You are a warrior. You are a change maker. Your voice has the power to change the world and that is why you show up even on the bad days. Stay strong friend 💖
The world is full of survivors. I love that, even though I wish it was different and so much work to survive wasn't needed to live.
Bridget, I don’t know you, but I am you. 💔 Years living in fight or flight trying to save my qualifier have destroyed my nervous system. Make a casserole out of long Covid, EBV, POTS, PPPD (yes I have that MF-er too), guilt, shame and more. It sucks. There are no answers or cures…yet. Thank you for sharing. You are not alone. I am not alone.
We are definitely not alone. I think sharing is the only way we eventually find the answers. Thank you for sharing back. 🖤
So glad you wrote this one, my brave and resilient friend.
Well done. 💜
Thank you for hearing the backstory and for your amazing support. Always. 🖤
I was diagnosed with GAD for what I know was actually medical PTSD — witnessing your 12-year-old grandson go into cardiac arrest and not be revived for 12 minutes will do that to you, not to mention a long history of medical snafus and errors before that. They tried to put me on gabapentin and label it “anxiety disorder.” Like you, I’m a clinician — I know what I have. What I needed was a short-acting anti-anxiety med for doctor or dentist visits. But no — long-term gabapentin. 🙄 I didn’t take it, never went back, won’t go again. In my experience, I’m often teaching the so-called professional.
I’ve avoided COVID “like the plague” because on March 3, 2020, something deep inside me said: You cannot afford to get this. I’ve masked and stayed vaxxed ever since. So far, I’m a NOVID.
The vagus nerve is huge — the more we can learn about it and work on vagal tone, the better. Easier said than done. Every time I get momentum with my “stay-healthy” program, something stops me cold. Last week I was up to 7,000 steps a day, wearing a weight vest for five minutes five times a week — then a combination of massage and HSV flare set off extreme sciatic pain. Haven’t been able to walk more than around the house for a week.
I’m immunocompromised, EBV-positive (like most of us), and I know COVID can reactivate it. I’m grateful for the privilege of being retired so I can protect myself this much.
Right now, I’m sitting in a lawn chair with my feet in the grass — earthing. No idea if it’s “real,” but it feels good and is supposed to reduce inflammation.
Meanwhile, the stress load — losing three family members, witnessing a grandchild’s cardiac arrest, family estrangement — keeps my system on high alert. For me, stress shows up in severe GI attacks. No clear cause other than gallstones. And now, because of the scan that found them, they want a CT of my lungs to check on some scarring.
Just commiserating. I know how hard this is, and in your position it’s even harder. You have a young child at home, an older one incarcerated, and you’ve been sober only a few years. My heart goes out to you. You are a warrior. We’ve got this.
Well said, and thank you for adding your experience and your voice. That HSV is a bastard. Thank you for validating and commiserating. 🖤
It's so hard (near impossible) to find a medical professional that is willing to look outside the box, to listen to what you know about your own body. I think it will be getting only worse with this administration. "When a human sits too long in a corrosive bath of cortisol and adrenaline, inflammation spreads and cell destruction speeds up." I hear that. I know that. Thank you for sharing, I don't know what to say to make it better (my first reaction). I know there is nothing I can say. But, I hear you.
Thank you for just hearing me, for knowing, and always for your support. 🖤
You are so amazingly strong and resilient ... and, I know, exhausted and overwhelmed and frustrated. I am so glad (and relieved) you are doing 'better' but I have witnessed the struggle and I know it continues. I wish so many things - that there were answers, cures, treatments, more support, more understanding, less dismissal, less arrogance in the health care field, more awareness in (and of) 'the system' ... and my personal pet peeve, that the insurance companies and big pharma were not the drivers of so many 'decisions' so that they profit.
Thank you, friend, for all of these wishes and for your continued, fierce loving support. 🖤
As you know, our family has had a similar journey with our daughter’s diagnosis of many of the same conditions. It is heartbreaking and rage-making and exhausting…. I am so grateful that we finally found a medical team who gets it. She too had doctors who told her that it was all in her head and she needed treatment for anxiety, depression or whatever. While we are fans of therapy, those comments missed the point of her very real disability. I hope you continue to find medical folks to support you.