My first thought is “everything in this country is a scam”. Why aren’t we better at taking care of our citizens? Why is everything profit driven (well we know why but WHO let it get this way???). Thank you both for your honesty and courage.
I’ve decided to say no to guilt. It’s a wasted emotion that drains me of valuable energy. It keeps me from living in the present. Such a waste! 😵💫
Great interview with that wonderful Amy! And it reminds me to be very grateful to be living in a country with decent health care. I also thought I would add in that I am one of the people that recovered from long covid using a technique that manipulates the mind-body connection. The internet is often full of people who are strongly against these techniques, so I am piping up with my positive experience!
Super interesting, thanks for sharing! I wish that when people gave strong advice one way or another they would do what you did, and say "this was my experience." There is rarely one right way!
Amazing to hear! I found when I chose an unauthodox path to wellness there will a lot of naysayers too! Collectively, I feel like we have a real aversion to identifying our needs and heaven forbid we put in place support to meet those needs. We talk a lot about the stigma around mental and chronic ill health. But what about the stigma we face around wellness?
Thank you for reading, Helen, and for all the words of support you’ve given me since we met through the Substack Soirée. Folks like you who have recovered using mind-body are definitely keeping me going right now. So thankful you shared that with me when you did ☺️
Many thanks to the bravery and strength it took to open up and share this story. Beginning to read through interview already has my heart racing.
Shortly after my 30th birthday, I was forced to medically retire from a teaching career I had dreamt of since kindergarten, due to chronic hemiplegic migraine.
It’s been almost a dozen years later. I have yet to find the courage to write what I went through battling agonizing paralysis, and the war between a billion dollar private long-term disability insurance company and public Medicare.
Ah Megan, thank you for sharing a bit about your story, and I can only imagine some of the details from the basic sketch here. Like Amber, I would definitely be here for your writing, if and when you are moved to do it! And if that's never, that's fine too!
I spent the morning in bed, on meds, blocking out the world. Still in my robe at 1:40, I realize my 105lb lab mix was missing and wouldn’t recall. Barely dressed I hiked the hill behind the house, looking back I found him struggling to keep his head above water in my neighbor’s above ground pool. It’s 45 degrees out, and he’s trapped in the plastic cover. I ran down the hill, jump in and heave the beast out of the frigid water while trying to keep him from coming back in after me.
Courage. It’s there.
Six years ago my private insurance company canceled my years long benefit because I “failed to terminate an unplanned pregnancy which precluded her preventative medication.”
The insurance company wanted the right to choose whether I had a child. Their doctor, who had never examined me stated, “anyone in that much pain would never chose to carry a child”. The company, who was paid 14 million dollars a year by my school district to insure our teachers, and who is repaid in full every time they get one of them on Medicare, canceled my policy because I chose my child’s health above my temporary comfort. They doubted a public servant, a teacher, would choose motherhood... even if they are ‘disabled’. Are the disabled allowed to have children?
Today I jumped into freezing water for my dog with a migraine. I will be in bed for the next couple of days recovering must likely. To think I wouldn’t do far more for my own child is asinine.
My daughter is one of the reasons I stay alive. I can’t imagine life without her. She is the best surprise of my life, she is sunshine and rain. She holds funerals for moths in public parks and praises tiny spiders to crawl as best as they can to get where they are going.
A couple nights ago she told me, “I hope heaven is just like life here.” “–But without all the pain, fear and loneliness?” I asked. “No.” she corrected, “The hard parts too. Sometimes you have to do the hard things to make things better.”
I am sorry to hear you have suffered hemiplegic migraine for so long and with such devastating effects on your life.
I love how you say “I have yet to find the courage to write” in a way that suggests on a deeper level that you know the courage is there, waiting for you to find and connect with it.
As a fellow migraine warrior, I for one, would love to hear the words of wisdom you have to share on the brutality of what you have endured. It’s a wisdom that can only come from this level of pain and suffering and a place from which a death and rebirth can occur. Ultimately bringing about and creating much needed change to the way we see, feel and are able to “be” in this world.
Meeting a fellow migraineur I always am sorry to feel a sense of companionship; I would never wish membership into this club on anyone, but misery loves company. Still, I pray you find your key out, away from triggers and out of dark, silent rooms.
Megan, wow. I’m so sorry. I had chronic migraines for eight years (2010-2018) and I suffered through it. Never occurred to me to apply then for leave. I am certain you experienced some of the same dehumanizing feelings that I have (and more). Sending hugs.
The worst part is fighting for every good day while proving a disability. I wanted to celebrate my successes, but was punished for not accentuating my deficits.
THAT RIGHT THERE. When I’ve had any little bit of improvement, I’ve had to tell my doctors, “please don’t write that in my notes.” Especially because progress can be so fleeting. I also really resent having to “perform” disability to increase my chances of being believed.
I'm sorry to hear of your struggles Amy. I hear you when you say you know you'll be able to work again at some point because you have much to offer. I feel much the same.
1. I've got a couple of go to's for shutting my brain down: first is to lie on my bed and close my eyes and second is to go for a swim. Putting myself in water--either a pool or the ocean, calms my brain.
2. I wouldn't have gotten through the last 2.5 years without pacing. I can now do two things a day. But I am sure to leave a couple of days completely blank to re-build my energy.
3. In order to save my energy, I don't go out to meet people. Talking to people and 'chatting' is very draining. My energy goes for my grandkids and myself.
Ironically, I heard from my insurer this afternoon and they denied my LTD claim. Hearing about your efforts paying off, even though it took time and energy, gave me the jolt to keep persuing it. Tks.
Right back at you! I'm thinking of you as November is very quickly approaching. If you're pregnancy announcement is what it was, I'm really looking forward to the birth announcement. ;) xo
Thanks for reading, Kim, and for sharing your pacing hacks. I’ve recently started just laying on my yoga mat to ground myself. If I lay on the couch, my body seems to think it’s time to start scrolling or reading. Whatever tricks our brains, yeah?
Ugh, I’m terribly sorry to hear about your LTD denial. I definitely suggest getting an attorney before doing the appeal. If you’re in the U.S., Kantor & Kantor in California (but serves many states) are absolute experts in appealing these denials for folks with difficult to prove illnesses. Happy to chat more: coppertop963 at gmail dot com.
Amy, I loved reading what you’ve learned about yourself and your body throughout this process. It’s inspiring to see that you are hopeful for the future and that you know you have much to offer and work is in the future for you. I agree, I see it for you! The world needs to see your work.
I feel exhausted just reading what you had to go through to get disability benefits, Amy. It's when we're at our most vulnerable and most in need of help that those barriers seem to grow to insurmountable levels.
I know people here in the UK who've had similar experiences, including one who was prosecuted for benefit fraud when she was still suffering the long-term effects of Legionnaires and HIV, both contracted while working in a hospital. She won her case, but the emotional and physical toll was horrendous. I totally understand your hyper-vigilance about recording your every move in case anyone else is doing the same. Ugh.
Thanks so much, Miranda. I have heard some horror stories too. Profits over people. It’s shameful. My employer paid the premium on my policy for about 15 years while I was healthy, so when I got denied multiple times, it felt like a real stab in the back. My boss (the CEO) was PISSED too. In fact, my company changed insurance carriers while I was still sick but working, and I think the new company made a big difference because at least when they call me, they are human and helpful. As much as their calls rattle me, because they’re always trying to check off a box. You have to be so careful not to say too much to these people.
I hope the change of company will help anyone who needs to claim in the future. Do you have to keep paying your insurance subs, even when you're not able to work? I struggle to get my head around how it works in the USA.
So, my employer paid the LTD insurance premiums in full. The only qualifier is that my premium had to be paid through the date I officially became “disabled” (unable to work). The premium doesn’t have to be paid after that. And I ultimately wound up not being able to return to work or to that employer, so the premium wasn’t paid after I left.
Love love love these shared stories, insights, wisdom! Thoroughly enjoying getting to know Amy this past week or so and witnessing the depth of her journey to the extent I am.
Feeling a real shift in our community of turning to look forwards to what those in recovery are doing differently. The disparities between the medical system and our lived experience. We can only bring about change when we know and understand it in the way we do from this angle. Staying true to what we want, what’s important to us and what our bodies are telling us. (Which is polarising to so many others).
2 things come to mind re shutting my brain down: meditation (something I struggled with enormously for years. Then the one thing that also changed the relationship I had with my own pain and suffering, catapulting me onto a new trajectory of hope and healing as if overnight 5 years ago. I do it multiple times a day.). Lying on my bed and belly breathing. Long slow deep breaths. Repeatedly. As often in a day as required.
I haven’t heard of pacing. Though if it’s anything like brain retraining, I will have been doing it on a self-taught/guided way. Meeting my body where it’s at (acceptance) and doing what I can, when I can. Realising there is no way out, the only way is through.
I started saying no for the very first time in my life a couple of years ago. It was actually way easier to be in severe and agonising pain (thereby forced to say no, with responsibility taken out of my hands), than it was to learn to say no. I’d love to know if any chronic pain warriors resonate with this? Last year I had to learn to say no multiple times in a week (to avoid severe and agonising pain). Put In a ten day rest window where I closed down my diary to more work, said no to nearly all engagements with friends etc and rested as much as I could. It was one of the most frustrating parts of my journey. Bringing about an agony of its own! It’s also led to one of the biggest breakthroughs in my health and healing.
That's such a profound observation that it was easier to be in severe and agonizing pain than to learn to say no. It's hard to imagine that being true, but also sadly resonates with me (and based on my conversations, probably others too). Here's to trying to shift that dynamic for ourselves and others.
In a logical and analytical sense it just doesn’t make sense at all. But on a much deeper level, I’ve come to understand more in connection to the root of it. I don’t know how to articulate it into words yet but if my writing and past experience is anything to go by, I will find a way at some point.
Amber and Rae, this absolutely resonates with me too. I mentioned in an earlier comment that I lived with chronic migraines for eight years. I barely took a sick day during that time, for this very reason - it was easier in some ways just to get stuff done still, even though I was blinded by the pain a lot of days.
Pacing is a lot like what you did with meditation and also saying no. It’s listening to your body and giving it what it needs in the moment. It’s fighting the urge to check one more thing off your to do list if your energy is starting to flag. I’d argue from what I’ve already read of your stuff, Amber, that you’ve mastered pacing without knowing the term ☺️
😲wowzers Amy! That’s insane. Why do we do this to ourselves?
I’m going to have to add pacing to my list! What you’re describing is exactly what I’ve done from the off (at the point I consider myself to have “woken up” to complete disability by illness and the seriousness of my situation). Before this last couple of weeks, I didn’t know there were actual terms for what I’d been doing all this time. It all came from feeling my way forward, drowning out the noise of everybody else and tuning into what I knew to be true. Alongside research and understanding more about my body and what I was living with. I can’t wait to share my book with the world, people will heal a lot faster than what I did when they read it,
This post has been on my mind for two days. I wanted to comment as soon as I read it, but couldn’t articulate my thoughts. To be honest, I’m still not sure exactly how to say it, but don’t know that I ever will (my insecurity around writing and self-doubt are no help). I’m ELEPHANT you are dealing with this. The system is incredibly flawed and hearing stories like this leave me frustrated and confused. I also can’t help but feel a little pang of guilt as I have been on SSD for the past 8-9 years. At the time I was approved, I had no idea how unusual that was. Maybe it had to do with the reasoning at the time (major depression and PTSD). I do struggle with debilitating physical health issues, however have no diagnosis so those would be of no use - mostly due to doctors dismissing it all as symptoms of depression for years.
That said, receiving benefits isn’t without (major) flaws. I am truly grateful that I get anything, don’t get me wrong, but it has also come at a cost. The first major hurdle for me was Medicare. I got the notice saying I was eligible after being on disability for 2 years but not that it was mandatory so I didn’t sign up. The plan I’d been on was through healthcare.gov and because I was low income, I received a tax credit I paid nothing. Why would I switch to Medicare and pay over $100/month...not to mention the benefits. It wasn’t until months later when I was contacted by my plan saying I was no longer eligible that I found out Medicare was required. Apparently it was a big issue at that time because I found a notice about it hidden on Medicare’s website (info on special enrollment and waiving fees), yet it took over a year of countless phone calls before I would have coverage. I ended up having to go to the ER, leaving me with a huge bill I couldn’t pay going to collections and wrecking my previously non-existent credit. That plays into the biggest issue - the amount of money you get isn’t enough to live off of. They base it on your income. Given I was in my 20’s when I was approved and was unable to finish college (due to the exact reason I was on disability), the jobs I’d worked were entry level. What about people disabled as kids? What is the amount they get based on? Even living with my parents and not paying rent, there were times I could hardly afford food. I’ve been homeless. To lease an apartment around here places require you to have an income higher than 3 times the rent (even with a voucher through a housing authority). Maybe it’s just me, but what I get doesn’t even amount to one month for a decent place (by decent, I mean in a relatively safe area and stable).
People have this idea that being on disability is fun, something “lazy” people do to avoid working (at least, that’s my experience). That, I feel, is a huge part of the problem and why it has become so impossible to get benefits and kept them from raising it to an amount that’s possible to actually live off of rather than just survive. Sorry, I didn’t mean to make this about me. The topic hits home and always gets my blood boiling. My point in all of this is to say I see you. 🫶🏼
Write on, Rachel! I appreciate you sharing your story, and don't worry, I don't think anyone here would feel like you're making it about you. You've been through it, and your experiences highlight a lot of the same issues with our system that Amy discusses in this interview. The notion that anyone would go through all of this because they're lazy make no sense at all...no lazy person could get and keep these benefits, and as you say the benefits are far from generous. Both you and Amy have had to work your as*es off to achieve even the most basic level of resources for survival, and that should be recognized.
Such a great interview! And I think that no matter the symptoms, on some level as women, we can probably all relate to that feeling of ‘if I’m not working, I should be changing the sheets, wiping down the counter’... so I can only imagine this push pull when dealing with a chronic illness on top of this!! Thank you for sharing 🙏
Thank you for your interview! I just saw my PCP to review my 2 day CPET. He unfortunately had not seen it before my appointment and quickly skimmed it. He suggested I get a functional capacity test as he said that is the test SSDI recognizes. I am hesitant do it as 1. It’s the days after the test that I crash and it doesn’t sound specific to Long Covid or ME/CFS 2. It took me over a week to recover from the CPET. I want to put forth the best evidence for my disability case, but not make myself sicker in the process. As you said the process itself is dehumanizing and consumes too much mental & physical energy.
I hate hearing that your doctor had not read your report before the appointment and had to skim it in front of you. I know that our medical system does not allow doctors enough time to do this, but it still really bums me out. I have had a handful of experiences (in my whole life) where I go into an exam room and the doctor has read my chart, and it feels so incredible and makes the appointment so much more helpful every time. It's sad that the bar is this low.
This is so great. Amy, I love you and this interview gave me hope for you. Rae, thank you for doing this interview and putting all this info out there ❤️
"The process of “proving” you are ill enough for disability benefits is totally demoralizing."
This resonates with me so much! I also have chronic stomach and pain issues and have been to every possible western doctor and eastern / non-traditional healing doctor. I left my prior job because the stress was making my health issues worse. The "problem" I guess is I don't look sick per se and I feel like I always have to justify or prove that I am sick so that people don't think I'm lying or overplaying it. I think we have a certain "view" of what a sick person is "supposed" to look like...
Thank you for this. It was very validating to read!
@Amy - The Tonic It’s highly possible I’m just over-thinking, but hope my last comment didn’t come off as “braggy” (that I was approved for benefits) or too off-topic. When I am passionate about a topic I tend to go off on tangents, or ramble as people often tell me. I know there is a difference in Social Security and LTD but what exactly that is and the process of applying is unclear.
What resonated more than anything was the feeling of not being heard...constantly having to prove yourself. That’s difficult in any situation, but when you are in a place where it takes every bit of energy to do even the most basic daily tasks it really takes a toll. In my experience, it has been the people closest to me (family) that doubted me most and, in turn, I began to question myself. I finally realized that nothing I say or do, no amount of explaining, is going to change what they think. Rather than waste the precious energy I do have attempting (unsuccessfully) to prove myself, I stopped engaging in those conversations and now spend it doing things that didn’t make me feel horrible about myself or guilty about what I’m not doing.
Again, I’m rambling, but if I say can be helpful to even one person I consider it worthwhile.
Wow. Thank you for reading and for taking the time to comment in full. I’m astounded that SSDI denied you with the CPET results. My report is filled with all my functional limitations too. I’m in the first appeal phase now, with my second round of SSDI medical appointments coming up in a few weeks. It’s really disgusting that, by their own guidelines, the SSA says you need proof of functional impairment; you provide that proof, backed by scores of scientific papers, and they deny you. You are right; the grief never ends 😔.
You probably have already heard this, but there are plenty out there beyond the three year mark who have made full or near-full recoveries from ME/CFS. You may already have watched some of the videos on Raelan Agle’s YouTube channel. She’s one such person who recovered after 10 years, but she’s interviewed many others. I’m 3.5 years in, but these interviews have kept the window to recovery cracked open for me, if only a little. Sending you strength 🧡
Gosh I’m so sorry to read all this. I am in awe at your ability to practice acceptance and find joy in the small moments. I know you mentioned your doctor told you recovery is only possible in the first 3 years of illness but what do you believe to be true? How does your body feel about that? I only ask because I realised the opinion of my neurologist didn’t align with what my body knew to be true. It felt like we were both facing different directions so I went off in my own direction and it took me further than he believed possible.
My first thought is “everything in this country is a scam”. Why aren’t we better at taking care of our citizens? Why is everything profit driven (well we know why but WHO let it get this way???). Thank you both for your honesty and courage.
I’ve decided to say no to guilt. It’s a wasted emotion that drains me of valuable energy. It keeps me from living in the present. Such a waste! 😵💫
Woohoo to saying bye to guilt! Still working on that :) :)
Thank you for reading and empathizing, Natalie. And HEAR, HEAR to letting go of guilt! 🙌🏻
Great interview with that wonderful Amy! And it reminds me to be very grateful to be living in a country with decent health care. I also thought I would add in that I am one of the people that recovered from long covid using a technique that manipulates the mind-body connection. The internet is often full of people who are strongly against these techniques, so I am piping up with my positive experience!
Super interesting, thanks for sharing! I wish that when people gave strong advice one way or another they would do what you did, and say "this was my experience." There is rarely one right way!
Yes, and its pretty counter productive to shove things at people, anyway
Amazing to hear! I found when I chose an unauthodox path to wellness there will a lot of naysayers too! Collectively, I feel like we have a real aversion to identifying our needs and heaven forbid we put in place support to meet those needs. We talk a lot about the stigma around mental and chronic ill health. But what about the stigma we face around wellness?
Do you mind sharing what technique you used? I have long covid and am looking for anything to recover!
Sure, I used the Lightening Process. For me, my daughter and a lot of people I know it was quick and effective.
However about 35% won’t have such a good result. They will all post on forums about how it didn’t work!
In essence, it super charges the placebo effect, which takes about 3 days of fairly repetitive mental work.
thank you!
Thank you for reading, Helen, and for all the words of support you’ve given me since we met through the Substack Soirée. Folks like you who have recovered using mind-body are definitely keeping me going right now. So thankful you shared that with me when you did ☺️
Yay
Many thanks to the bravery and strength it took to open up and share this story. Beginning to read through interview already has my heart racing.
Shortly after my 30th birthday, I was forced to medically retire from a teaching career I had dreamt of since kindergarten, due to chronic hemiplegic migraine.
It’s been almost a dozen years later. I have yet to find the courage to write what I went through battling agonizing paralysis, and the war between a billion dollar private long-term disability insurance company and public Medicare.
I doubt I ever will.
In such a time as this,
the weak hold up the wealthy.
Ah Megan, thank you for sharing a bit about your story, and I can only imagine some of the details from the basic sketch here. Like Amber, I would definitely be here for your writing, if and when you are moved to do it! And if that's never, that's fine too!
I spent the morning in bed, on meds, blocking out the world. Still in my robe at 1:40, I realize my 105lb lab mix was missing and wouldn’t recall. Barely dressed I hiked the hill behind the house, looking back I found him struggling to keep his head above water in my neighbor’s above ground pool. It’s 45 degrees out, and he’s trapped in the plastic cover. I ran down the hill, jump in and heave the beast out of the frigid water while trying to keep him from coming back in after me.
Courage. It’s there.
Six years ago my private insurance company canceled my years long benefit because I “failed to terminate an unplanned pregnancy which precluded her preventative medication.”
The insurance company wanted the right to choose whether I had a child. Their doctor, who had never examined me stated, “anyone in that much pain would never chose to carry a child”. The company, who was paid 14 million dollars a year by my school district to insure our teachers, and who is repaid in full every time they get one of them on Medicare, canceled my policy because I chose my child’s health above my temporary comfort. They doubted a public servant, a teacher, would choose motherhood... even if they are ‘disabled’. Are the disabled allowed to have children?
Today I jumped into freezing water for my dog with a migraine. I will be in bed for the next couple of days recovering must likely. To think I wouldn’t do far more for my own child is asinine.
My daughter is one of the reasons I stay alive. I can’t imagine life without her. She is the best surprise of my life, she is sunshine and rain. She holds funerals for moths in public parks and praises tiny spiders to crawl as best as they can to get where they are going.
A couple nights ago she told me, “I hope heaven is just like life here.” “–But without all the pain, fear and loneliness?” I asked. “No.” she corrected, “The hard parts too. Sometimes you have to do the hard things to make things better.”
I am sorry to hear you have suffered hemiplegic migraine for so long and with such devastating effects on your life.
I love how you say “I have yet to find the courage to write” in a way that suggests on a deeper level that you know the courage is there, waiting for you to find and connect with it.
As a fellow migraine warrior, I for one, would love to hear the words of wisdom you have to share on the brutality of what you have endured. It’s a wisdom that can only come from this level of pain and suffering and a place from which a death and rebirth can occur. Ultimately bringing about and creating much needed change to the way we see, feel and are able to “be” in this world.
Amen!
Meeting a fellow migraineur I always am sorry to feel a sense of companionship; I would never wish membership into this club on anyone, but misery loves company. Still, I pray you find your key out, away from triggers and out of dark, silent rooms.
Thank you for encouraging truths be told.
Megan, wow. I’m so sorry. I had chronic migraines for eight years (2010-2018) and I suffered through it. Never occurred to me to apply then for leave. I am certain you experienced some of the same dehumanizing feelings that I have (and more). Sending hugs.
The worst part is fighting for every good day while proving a disability. I wanted to celebrate my successes, but was punished for not accentuating my deficits.
THAT RIGHT THERE. When I’ve had any little bit of improvement, I’ve had to tell my doctors, “please don’t write that in my notes.” Especially because progress can be so fleeting. I also really resent having to “perform” disability to increase my chances of being believed.
I'm sorry to hear of your struggles Amy. I hear you when you say you know you'll be able to work again at some point because you have much to offer. I feel much the same.
1. I've got a couple of go to's for shutting my brain down: first is to lie on my bed and close my eyes and second is to go for a swim. Putting myself in water--either a pool or the ocean, calms my brain.
2. I wouldn't have gotten through the last 2.5 years without pacing. I can now do two things a day. But I am sure to leave a couple of days completely blank to re-build my energy.
3. In order to save my energy, I don't go out to meet people. Talking to people and 'chatting' is very draining. My energy goes for my grandkids and myself.
Ironically, I heard from my insurer this afternoon and they denied my LTD claim. Hearing about your efforts paying off, even though it took time and energy, gave me the jolt to keep persuing it. Tks.
Oh Kim I'm so sorry to hear about the bad news today. I love your clarity on your prioritization: it's about the grandkids. Sending love!
Right back at you! I'm thinking of you as November is very quickly approaching. If you're pregnancy announcement is what it was, I'm really looking forward to the birth announcement. ;) xo
Thanks for reading, Kim, and for sharing your pacing hacks. I’ve recently started just laying on my yoga mat to ground myself. If I lay on the couch, my body seems to think it’s time to start scrolling or reading. Whatever tricks our brains, yeah?
Ugh, I’m terribly sorry to hear about your LTD denial. I definitely suggest getting an attorney before doing the appeal. If you’re in the U.S., Kantor & Kantor in California (but serves many states) are absolute experts in appealing these denials for folks with difficult to prove illnesses. Happy to chat more: coppertop963 at gmail dot com.
Hi Amy. I'm in Canada (west coast). This time around I am using a lawyer. I could kick myself for not contacting him sooner.
Oh, that’s good. Many attorneys here won’t even take your case until you get your first LTD denial. I thought that was interesting.
wow, thanks for creating this interview. Quite relevant and interesting to read (especially for someone with a chronic eye condition)
I'm glad it resonated, Rosana, and thanks for writing!
Amy, I loved reading what you’ve learned about yourself and your body throughout this process. It’s inspiring to see that you are hopeful for the future and that you know you have much to offer and work is in the future for you. I agree, I see it for you! The world needs to see your work.
Yes, I loved that part of the interview too!
This means a lot to me, Stephanie! It’s hard to stay hopeful every single day, but mostly I am!
I feel exhausted just reading what you had to go through to get disability benefits, Amy. It's when we're at our most vulnerable and most in need of help that those barriers seem to grow to insurmountable levels.
I know people here in the UK who've had similar experiences, including one who was prosecuted for benefit fraud when she was still suffering the long-term effects of Legionnaires and HIV, both contracted while working in a hospital. She won her case, but the emotional and physical toll was horrendous. I totally understand your hyper-vigilance about recording your every move in case anyone else is doing the same. Ugh.
It's hard to hear how common this experience is 😔
Thanks so much, Miranda. I have heard some horror stories too. Profits over people. It’s shameful. My employer paid the premium on my policy for about 15 years while I was healthy, so when I got denied multiple times, it felt like a real stab in the back. My boss (the CEO) was PISSED too. In fact, my company changed insurance carriers while I was still sick but working, and I think the new company made a big difference because at least when they call me, they are human and helpful. As much as their calls rattle me, because they’re always trying to check off a box. You have to be so careful not to say too much to these people.
I hope the change of company will help anyone who needs to claim in the future. Do you have to keep paying your insurance subs, even when you're not able to work? I struggle to get my head around how it works in the USA.
So, my employer paid the LTD insurance premiums in full. The only qualifier is that my premium had to be paid through the date I officially became “disabled” (unable to work). The premium doesn’t have to be paid after that. And I ultimately wound up not being able to return to work or to that employer, so the premium wasn’t paid after I left.
Love love love these shared stories, insights, wisdom! Thoroughly enjoying getting to know Amy this past week or so and witnessing the depth of her journey to the extent I am.
Feeling a real shift in our community of turning to look forwards to what those in recovery are doing differently. The disparities between the medical system and our lived experience. We can only bring about change when we know and understand it in the way we do from this angle. Staying true to what we want, what’s important to us and what our bodies are telling us. (Which is polarising to so many others).
2 things come to mind re shutting my brain down: meditation (something I struggled with enormously for years. Then the one thing that also changed the relationship I had with my own pain and suffering, catapulting me onto a new trajectory of hope and healing as if overnight 5 years ago. I do it multiple times a day.). Lying on my bed and belly breathing. Long slow deep breaths. Repeatedly. As often in a day as required.
I haven’t heard of pacing. Though if it’s anything like brain retraining, I will have been doing it on a self-taught/guided way. Meeting my body where it’s at (acceptance) and doing what I can, when I can. Realising there is no way out, the only way is through.
I started saying no for the very first time in my life a couple of years ago. It was actually way easier to be in severe and agonising pain (thereby forced to say no, with responsibility taken out of my hands), than it was to learn to say no. I’d love to know if any chronic pain warriors resonate with this? Last year I had to learn to say no multiple times in a week (to avoid severe and agonising pain). Put In a ten day rest window where I closed down my diary to more work, said no to nearly all engagements with friends etc and rested as much as I could. It was one of the most frustrating parts of my journey. Bringing about an agony of its own! It’s also led to one of the biggest breakthroughs in my health and healing.
💜
That's such a profound observation that it was easier to be in severe and agonizing pain than to learn to say no. It's hard to imagine that being true, but also sadly resonates with me (and based on my conversations, probably others too). Here's to trying to shift that dynamic for ourselves and others.
In a logical and analytical sense it just doesn’t make sense at all. But on a much deeper level, I’ve come to understand more in connection to the root of it. I don’t know how to articulate it into words yet but if my writing and past experience is anything to go by, I will find a way at some point.
Amber and Rae, this absolutely resonates with me too. I mentioned in an earlier comment that I lived with chronic migraines for eight years. I barely took a sick day during that time, for this very reason - it was easier in some ways just to get stuff done still, even though I was blinded by the pain a lot of days.
Pacing is a lot like what you did with meditation and also saying no. It’s listening to your body and giving it what it needs in the moment. It’s fighting the urge to check one more thing off your to do list if your energy is starting to flag. I’d argue from what I’ve already read of your stuff, Amber, that you’ve mastered pacing without knowing the term ☺️
😲wowzers Amy! That’s insane. Why do we do this to ourselves?
I’m going to have to add pacing to my list! What you’re describing is exactly what I’ve done from the off (at the point I consider myself to have “woken up” to complete disability by illness and the seriousness of my situation). Before this last couple of weeks, I didn’t know there were actual terms for what I’d been doing all this time. It all came from feeling my way forward, drowning out the noise of everybody else and tuning into what I knew to be true. Alongside research and understanding more about my body and what I was living with. I can’t wait to share my book with the world, people will heal a lot faster than what I did when they read it,
Ooh, I can’t wait either! 🧡
This post has been on my mind for two days. I wanted to comment as soon as I read it, but couldn’t articulate my thoughts. To be honest, I’m still not sure exactly how to say it, but don’t know that I ever will (my insecurity around writing and self-doubt are no help). I’m ELEPHANT you are dealing with this. The system is incredibly flawed and hearing stories like this leave me frustrated and confused. I also can’t help but feel a little pang of guilt as I have been on SSD for the past 8-9 years. At the time I was approved, I had no idea how unusual that was. Maybe it had to do with the reasoning at the time (major depression and PTSD). I do struggle with debilitating physical health issues, however have no diagnosis so those would be of no use - mostly due to doctors dismissing it all as symptoms of depression for years.
That said, receiving benefits isn’t without (major) flaws. I am truly grateful that I get anything, don’t get me wrong, but it has also come at a cost. The first major hurdle for me was Medicare. I got the notice saying I was eligible after being on disability for 2 years but not that it was mandatory so I didn’t sign up. The plan I’d been on was through healthcare.gov and because I was low income, I received a tax credit I paid nothing. Why would I switch to Medicare and pay over $100/month...not to mention the benefits. It wasn’t until months later when I was contacted by my plan saying I was no longer eligible that I found out Medicare was required. Apparently it was a big issue at that time because I found a notice about it hidden on Medicare’s website (info on special enrollment and waiving fees), yet it took over a year of countless phone calls before I would have coverage. I ended up having to go to the ER, leaving me with a huge bill I couldn’t pay going to collections and wrecking my previously non-existent credit. That plays into the biggest issue - the amount of money you get isn’t enough to live off of. They base it on your income. Given I was in my 20’s when I was approved and was unable to finish college (due to the exact reason I was on disability), the jobs I’d worked were entry level. What about people disabled as kids? What is the amount they get based on? Even living with my parents and not paying rent, there were times I could hardly afford food. I’ve been homeless. To lease an apartment around here places require you to have an income higher than 3 times the rent (even with a voucher through a housing authority). Maybe it’s just me, but what I get doesn’t even amount to one month for a decent place (by decent, I mean in a relatively safe area and stable).
People have this idea that being on disability is fun, something “lazy” people do to avoid working (at least, that’s my experience). That, I feel, is a huge part of the problem and why it has become so impossible to get benefits and kept them from raising it to an amount that’s possible to actually live off of rather than just survive. Sorry, I didn’t mean to make this about me. The topic hits home and always gets my blood boiling. My point in all of this is to say I see you. 🫶🏼
Write on, Rachel! I appreciate you sharing your story, and don't worry, I don't think anyone here would feel like you're making it about you. You've been through it, and your experiences highlight a lot of the same issues with our system that Amy discusses in this interview. The notion that anyone would go through all of this because they're lazy make no sense at all...no lazy person could get and keep these benefits, and as you say the benefits are far from generous. Both you and Amy have had to work your as*es off to achieve even the most basic level of resources for survival, and that should be recognized.
Such a great interview! And I think that no matter the symptoms, on some level as women, we can probably all relate to that feeling of ‘if I’m not working, I should be changing the sheets, wiping down the counter’... so I can only imagine this push pull when dealing with a chronic illness on top of this!! Thank you for sharing 🙏
Thank you for your interview! I just saw my PCP to review my 2 day CPET. He unfortunately had not seen it before my appointment and quickly skimmed it. He suggested I get a functional capacity test as he said that is the test SSDI recognizes. I am hesitant do it as 1. It’s the days after the test that I crash and it doesn’t sound specific to Long Covid or ME/CFS 2. It took me over a week to recover from the CPET. I want to put forth the best evidence for my disability case, but not make myself sicker in the process. As you said the process itself is dehumanizing and consumes too much mental & physical energy.
I hate hearing that your doctor had not read your report before the appointment and had to skim it in front of you. I know that our medical system does not allow doctors enough time to do this, but it still really bums me out. I have had a handful of experiences (in my whole life) where I go into an exam room and the doctor has read my chart, and it feels so incredible and makes the appointment so much more helpful every time. It's sad that the bar is this low.
This is so great. Amy, I love you and this interview gave me hope for you. Rae, thank you for doing this interview and putting all this info out there ❤️
This interview was such an eye-opener on so many levels. I may have to read it a few times to let this stuff sink in. Thank you for making it happen!
Thanks for reading! It was an eye-opener for me too!
Thank you so much for reading, Robin.
"The process of “proving” you are ill enough for disability benefits is totally demoralizing."
This resonates with me so much! I also have chronic stomach and pain issues and have been to every possible western doctor and eastern / non-traditional healing doctor. I left my prior job because the stress was making my health issues worse. The "problem" I guess is I don't look sick per se and I feel like I always have to justify or prove that I am sick so that people don't think I'm lying or overplaying it. I think we have a certain "view" of what a sick person is "supposed" to look like...
Thank you for this. It was very validating to read!
@Amy - The Tonic It’s highly possible I’m just over-thinking, but hope my last comment didn’t come off as “braggy” (that I was approved for benefits) or too off-topic. When I am passionate about a topic I tend to go off on tangents, or ramble as people often tell me. I know there is a difference in Social Security and LTD but what exactly that is and the process of applying is unclear.
What resonated more than anything was the feeling of not being heard...constantly having to prove yourself. That’s difficult in any situation, but when you are in a place where it takes every bit of energy to do even the most basic daily tasks it really takes a toll. In my experience, it has been the people closest to me (family) that doubted me most and, in turn, I began to question myself. I finally realized that nothing I say or do, no amount of explaining, is going to change what they think. Rather than waste the precious energy I do have attempting (unsuccessfully) to prove myself, I stopped engaging in those conversations and now spend it doing things that didn’t make me feel horrible about myself or guilty about what I’m not doing.
Again, I’m rambling, but if I say can be helpful to even one person I consider it worthwhile.
Wow. Thank you for reading and for taking the time to comment in full. I’m astounded that SSDI denied you with the CPET results. My report is filled with all my functional limitations too. I’m in the first appeal phase now, with my second round of SSDI medical appointments coming up in a few weeks. It’s really disgusting that, by their own guidelines, the SSA says you need proof of functional impairment; you provide that proof, backed by scores of scientific papers, and they deny you. You are right; the grief never ends 😔.
You probably have already heard this, but there are plenty out there beyond the three year mark who have made full or near-full recoveries from ME/CFS. You may already have watched some of the videos on Raelan Agle’s YouTube channel. She’s one such person who recovered after 10 years, but she’s interviewed many others. I’m 3.5 years in, but these interviews have kept the window to recovery cracked open for me, if only a little. Sending you strength 🧡
Gosh I’m so sorry to read all this. I am in awe at your ability to practice acceptance and find joy in the small moments. I know you mentioned your doctor told you recovery is only possible in the first 3 years of illness but what do you believe to be true? How does your body feel about that? I only ask because I realised the opinion of my neurologist didn’t align with what my body knew to be true. It felt like we were both facing different directions so I went off in my own direction and it took me further than he believed possible.