I felt like I was screaming into the void

Amy of The Tonic on long COVID and the awful project of getting and keeping disability benefits

Art by Stephanie Davidson

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

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Amy - The Tonic

is a whip-smart straight shooter who was hit with long COVID in 2020 followed by a diagnosis of ME/CFS. Having spent her career advocating for others through her work as a nonprofit executive, she was thrown into the project of advocating for herself as she tried to secure disability benefits. I learned so much about the US disability benefits system from hearing about her journey, and about what it is like to live in fear of having those benefits taken away. We are only using Amy’s first name here so that this interview or her Substack newsletter can’t be used as evidence that she is actually able to work, grounds to remove her benefits. 

Amy writes the newsletter

The Tonic

, a refreshing concoction of wellness resources and stories for those interested in COVID, long COVID, ME/CFS, and other conditions…served straight up, with a dash of humor. Straight up with a dash of humor is a great description of this interview as well.

Key themes from this conversation:

• The process of “proving” you are ill enough for disability benefits is totally demoralizing. Even as a professional advocate, even with the skills and resources to get all the right tests, even with a supportive employer and a doctor who was on her team, Amy still came away from the process feeling dehumanized. She lives in daily fear that her benefits will be taken away if she makes a misstep.

• Pacing can be extremely difficult to embody, even when you believe it intellectually. Pacing is a therapeutic approach for fatigue-related syndromes where you modulate your activity based on your energy level. While it makes a lot of sense, it can often feel like if you are just doing too little–if you are not working, then at least you should be cleaning.

• With long, multifaceted illnesses, what works for one person works for one person. You can talk to ten long-haulers and find ten different approaches that helped with their particular symptoms.

Rae Katz: Let’s start with the basics: tell us in your own words about your chronic illness.

Amy: I have long COVID with a secondary ME/CFS diagnosis. Then there are a bunch of other diagnoses that followed. I have mast cell activation syndrome. I have POTS, which is Postural Orthostatic Tachycardia Syndrome. I have small fiber neuropathy. I have Epstein Barr Virus reactivation. And so many people with long COVID have this constellation of things. This is actually how I know I had long COVID–I never tested positive because I got the virus in March 2020.

R: That was a scary time to get COVID because, oh gosh, it was totally unknown, right?

A: Yes. So my doctor said, assume you have it, don’t go to the ER unless you can't breathe when you're sitting upright. 

R: I know you had some history of other body things going on before all this happened. Can you talk a little about that?

A: You know, before I got all this, I never would have connected any dots. I have autoimmune thyroid disease, but it was under control. I also had endometriosis. I also had chronic migraine headaches from 2010 to 2018. I had about 20 to 25 headache days a month. 

R: Wow. 

A: Yeah. Really severe ones. And I'm not really sure what the connection is. But when I went to see my infectious disease doctor in person, she asked me two questions. She said, “Do you have a history of migraines?” I said yes. And she said, “Do you have a history of endometriosis?” And I said yes. She didn't really even tell me why she was asking me…I just thought it was strange.

R: That's so interesting.

A: Yeah, she's an infectious disease doctor, but her specialty for the last fifteen or twenty years has been chronic fatigue syndrome.

R: So she's tuned in. 

A: Yeah, exactly. 

R: This seems so common in this chronic illness community–in retrospect, many things seem connected, but then no one will really confirm that for you. Basically it makes you feel crazy.

You are super on top of your exact diagnoses and when you got them, and my sense is that’s because that's been a critical aspect of your horrible journey trying to get disability benefits. You've basically had to become an expert on all your conditions and the disability benefit process. I am curious if you can talk a little bit more about that journey.

A: Absolutely. All my thoughts on this are wrapped up in how the whole process made me feel. I'm really fortunate–I had privilege and access–and even with that I'm totally exhausted by it. It's such a demoralizing process. You are constantly made to feel guilty until proven innocent. 

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It all started with trying to get a diagnosis. I had a longtime primary care doctor but I realized that she only really wanted to be my doctor when I was healthy. As soon as I kept coming back to her saying, “no, something is not right,” she just didn't want to hear it. She didn't refer me to anybody. She just ran the basic blood panel and told me “you're perfectly healthy Amy.”

So I just decided I had to leave her. And then every time I faced anything like that, I just left. As time went on, doctors got more comfortable saying “I'm so sorry for what you're going through, I’ve been reading about it and hearing about it. We just don't know enough yet.” And I was so appreciative. That was such a human response. 

And then it became more a project of symptom management–why don't you go see this or that kind of doctor, you know, visiting all the silos of our health system. Pretty quickly, I found that infectious disease doctor who specializes in chronic fatigue. And this is where it ties into the disability. She knew what tests to run that would start to find things. But I was already applying for disability for the first time around then, and they weren't going to connect the dots for me, and I didn’t have the results they wanted–I didn’t have a positive COVID result. So I was forced to go back to work before I was ready, in 2021. 

When I returned to work after my first leave in 2020, I worked for about a year and a half–full time, part time–I kept doing this dance of: I can do it, I can't do it. I was a nonprofit executive for an agency that works with domestic violence and human trafficking survivors, and I managed 55 staff. I was an administrator, basically in meetings all day long–head hurting meetings–contracts, grants, funding, crises, supervising people, whatever. It was very hard to do that job in any kind of limited capacity, even though my employer was completely supportive. So I went on my second leave, and I applied for disability again. 

I did the initial application and got denied again. Now by this point, it's already May 2022. I had two plus years of test results–I had seen a functional medicine doctor in between, and he tested my gut, my mitochondria, he ran a bunch of blood work that nobody would have thought to run, and he found a lot of things wrong. Gut dysbiosis, intestinal permeability issues, mitochondrial dysfunction–pretty significant stuff. I had also had an MRI that showed a brain lesion that was new since COVID. I had more test results than most long haulers would have had going into a disability application. And yet I was still denied. The siloed nature of medicine doesn't help because I had to rely on ten different doctors to send paperwork to support my claim, and a lot of them don't want to do it. 

So I had this whole constellation of things: I’m suddenly prediabetic, high cholesterol, my thyroid is going nuts. My endocrinologist cannot pin it down. I'm having metabolic changes, which is in the literature on long COVID. And now you have millions of people with long COVID all applying for the same disability insurance, all with these similar bizarre symptoms that could correlate but might not correlate. I felt like I was screaming into the void to this insurer: you don't understand, up to age 44 I was exercising six to seven days a week, I was a competitive volleyball player. I was a major hiker. I worked a pretty big job. I had a really full life. I'm a pescatarian, I was never diabetic, my cholesterol was never high, none of this, ever.

R: Right, in the context of your life, something was obviously very off. But to an insurer, being prediabetic, for example, didn’t prove anything.

A: Right. So what my infectious disease doctor said was, unfortunately, I think the only thing that's going to work for you is the two day cardiopulmonary exercise test. And the reason it has to be two days is because, for people with long COVID and ME/CFS, we can do the activity–I could decide I'm going to walk three miles today. Today's not the problem. It's what happens tomorrow and every day after, it's the payback. So the two day exercise test shows that you score normally the first day. Then day two, when they measure all the same things, like your oxygen and all this stuff, everything just tanks. 

There's a unit of energy called MET. I don't remember exactly what it stands for. But, if sitting up and reading a book required 2.1 METs, I was only creating 1.6. So in the report that they wrote up after that test, they wrote that “this means she's unable to even have a sedentary job.”

R: This was one thing that really made my blood boil when I read it in your description of your pursuit of benefits. It said something like, “we don't find any evidence that you can't do this sedentary job.” It really highlights, as you pointed out in your writing, the emphasis on physical disability, and completely discounts cognitive impairment and fatigue. It also just sounds insulting.

A: Absolutely. The other thing that the insurers are not paying attention to is that when you have dysautonomia, your nervous system is not functioning normally. So, all of a sudden it doesn't take a tiger to set you off anymore. It takes a door slamming and my whole nervous system is dysregulated. Any stimulus of any kind causes adrenaline and cortisone to start rushing through my veins, even when there's no real danger, all day long. I would be in my first meeting of the day, and it might not even be all that stressful, but if it was a little stressful, I'm on the couch for an hour and a half. Nobody's gonna hire me to work in 30 minute increments, especially if it's 30 minutes at 9:30 and then I can work another 30 minutes at 1:00. It's just unworkable. 

R: Yeah. 

A: So that two-day test turned the tide for me, and it got them to overturn my appeal. I was also researching how to do this–I watched a webinar that said you have to write these letters like you're an attorney. So I started writing bullet pointed timelines of all my test results. I would put the name of the test in bold. I wrote a four-page appeal that had these test results. So then they approved my short-term disability, and then I had to get approved for long term disability which took a little bit of time.

Since then, it’s just been constant stress. It’s hard to explain how it feels when they call–they're doing their jobs. I understand it. When certain people need the benefit, they push back hard because every person that they approve chips away at their profits. 

But it’s really scary. You read stuff online–like if they suspect that you're really able to work, but you're telling them you're not, they can hire private investigators to surveil you. And this is not a conspiracy theory, or a paranoid wacky thing. One guy, he was approved for long COVID. He needed something for his house and he had to drive to the home improvements store, and they trailed him, and they used that to deny him. 

So I've been so super careful with these folks. I have a calendar that sits by my kitchen table, and I write my symptoms every day. And then there's a note section, and I’ll write exactly where I went: went to CVS, went to the lab. They are not going to pull a gotcha on me. I could pull up the receipt if they need it. But this is how you have to live your life, in this exacting, really demoralizing way, to avoid getting cut off from the benefit.

R: Right. And it's also why we're not using your full name, because you're worried that even writing online or doing interviews online could count against you.

A: That's right. I was in the news a lot before COVID because of my job. So I had a Google alert set for my name, but now I have scrubbed my online presence. Just for this reason–I don't want them to twist things like my Substack. Every week I'm publishing, but it takes me five days to write an essay that takes seven minutes to read. And I write that in my Substack, just in case they ever do find it.

R: This is hard for me to imagine. I know how activating it is for me to experience one single perceived injustice in the medical system, let alone one after another after another for years, where basically you're assumed to be lying and exaggerating. There are obviously realities to consider regarding how insurance works, but I've got to believe there's some middle way, especially with a global crisis going on.

A: Right. It's a game, essentially.

R: You're obviously really good at it.

A: The thing that pisses me off is that my career was to be an advocate for people. So I can do that for myself. But that test I had to get cost me and my husband about four grand, once you count the test and the hotel and food and a cat sitter. We had the money at the time, but I was supervising people that had long COVID and couldn't go for that test. There was no way they could afford to go for that test that’s only offered in three places in the country. How many people are getting denied?

R: It’s tragic to think about.

Shifting gears a bit–you mentioned pacing earlier in our conversation. I was hoping you could talk a little bit about the concept of pacing and the therapy work you did that was related to that.

A: Sure, yeah. Early on when I got that ME/CFS diagnosis, I took a course for people to learn how to manage their ME/CFS, and that's when I first heard the concept of pacing. Logically it made a lot of sense to me: the only way out of this is through, and you have to figure out what you can afford to do.

R: Can you give an example? 

A: Yeah, sure. It takes me a half hour to an hour a day to just get out of bed, and then I have to gauge how much energy I have before I can decide what I’m going to do that day. So for me, at my worst, it was: I can shower today or I can cook lunch. But I can't do both. It's a constant titration of your energy levels versus the activity. If I overdo it, I wind up going backwards in my progress. 

I started seeing my therapist who had ME/CFS, and she had paced her way out of it. It took her about a year. She was really strict about it. She's the kind of person who understood it really quickly and knew in her bones that was how she was going to get out of it. I still had this disconnect between my intellectualization and my heart. It made sense to me that pacing would work, but I couldn’t really believe that I should do that little. I felt like if I’m not working, I should be changing the sheets, wiping down the counter. But you can't make those bargains.

I have a partner of 20 years and no kids. We always had a pretty fair division of labor in our relationship, but he had to take on a lot more. So I was feeling guilt, like, I could at least scoop the litter box. But bending over would send my heart rate racing. So it took me two full years of therapy with her until it started to click. When I look back on it, I couldn't have forced that any quicker. I'm stubborn, I’m overachieving type A–it takes a long time to get messages through and really have them sink in.

R: Especially when it's something that forces you to alter at a very core level who you are.

A: Exactly. So when I was working in therapy, we named my achiever part, his name is Saul. So then what was great is I would be telling my therapist something, and she'd say, “Just a question, did Saul have anything to do with what you did?” And I'm like, yeah. And she’d say, “Saul's not a bad thing. He's gotten you this far in life. But he will keep you from doing what you need to do right now.”

For example, with this illness, flat rest is really important because you have to get blood back to your heart and back to your brain. So I would lay down, and then scroll, text, YouTube. But no, you have to shut the computer that is your brain down, because that's taking energy–20% of your daily calories are used cognitively. 

R: It's interesting, what you're describing is this phenomenon where you just needed to hear it for a certain duration of time and a certain number of ways, from certain people, and then at some point something changed and for you. That really resonates with me. This does imply there's no “right advice,” because everyone's hearing it in different ways at different times in their journey, and it has to come together for each person in their individual way.

A: That's totally right. With long COVID, you can talk to 10 long haulers, and they have 10 different sets  of symptoms going on. 

R: With these illnesses there’s so much uncertainty, and I think that it's really interesting to hear how people balance hope and despair, and also how people plan in that state of uncertainty. So I’m curious how you think about the future.

A: That has shifted for me over time. As I've been reading and watching more recovery stories, I've realized that there's a very big role for your brain to rewire in such a way that makes you hopeful: other people have done this, which means I can do it. It may not happen the same way. It may not happen at all, but just knowing that it's a possibility that I’m seeing people recover, that I can make these attempts at least–that keeps me grasping for hope constantly. 

I keep telling my husband that I know I'm going to work again. I have too much to offer and I have too much I want to do and say, I know I'm going to be gainfully employed again. It may be part time for a long time.

I'll never be that person I was and I'll never have that kind of job again, as much as I loved my career. That job contributed to a lot of unhealthy patterns for me. But I'm really hopeful for the future. I see travel in my future, I see work, whatever work is going to look like. I see being able to live and enjoy myself, and maybe it'll be a changed definition of what I enjoy. 

I'll give you one small example: if I go for a run I crash. But running is not fun to me. So in my mind, I'm like: I don't ever have to run again, even if I'm 100% better. I'm not going to run any more. I’m not going to spend that precious energy doing something I don’t like. There are so many other ways I can get what I need–I don’t need to make myself do something I don't want to do.

Meet me in the comments

1. What’s your go-to way of shutting your brain down?

2. If you struggle with low energy due to chronic illness, have you tried pacing?

3. What have you decided NOT to spend your precious energy doing? What are you saying “no” to lately?