53 Comments

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! 😵‍💫

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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!

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Oct 27, 2023Liked by Rachel Katz

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.

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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.

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wow, thanks for creating this interview. Quite relevant and interesting to read (especially for someone with a chronic eye condition)

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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.

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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.

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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.

💜

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Oct 28, 2023Liked by Rachel Katz

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. 🫶🏼

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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 🙏

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Oct 28, 2023Liked by Rachel Katz

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.

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Oct 28, 2023Liked by Rachel Katz

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 ❤️

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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!

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"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!

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@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.

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