#48: Money, Disability and Asking For Help Without Shame, with Kira Stoops

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In this episode of Long COVID MD, Dr. Zeest Khan discusses the financial challenges faced by individuals with long COVID and chronic illnesses. She interviews Kira Stoops, a writer and advocate, who shares her personal journey with chronic illness, the importance of asking for help, and the value of building community. They explore the realities of managing finances while living with a disability, the stigma around seeking assistance, and the tools that can aid in adapting to new life circumstances. Kira emphasizes the importance of self-compassion and the need to cut oneself some slack while navigating these challenges.

Kira Stoops

Kira is a writer who is chronically ill. Despite having ME/CFS for nearly a decade, she's determined to live the good life: close connections, moments of sunshine, meaningful work, and snarky humor. Find more of her work at Flying Bicycle Creative, her (free!) Meatscon tool for sickies here, and her Substack about luxe sickie life here. 

Transcript

Speaker 2 (00:00)
Hi, I'm Dr. Zeest Khan, the Long COVID MD. I'm a physician with long COVID and I've applied all of my medical expertise to my recovery. Luckily, it's working and I want to share what I've learned with you. On this podcast, I help you understand your body and understand the healthcare system so you can move your own health forward.

We've got a lot to talk about, but remember, nothing I say here replaces personalized medical advice from your healthcare team. Let's get started. Hey everybody, welcome or welcome back to Long COVID MD. I'm Dr. Zeest Khan, a licensed physician and a patient with Long COVID. On this podcast, we talk about the healthcare system, how to navigate it to get the care that you need. And we also talk about the social, cultural, and personal ramifications of living with Long COVID.

Today we're talking about money. Recently somebody asked me what the most effective treatment for long COVID has been in my life. And I answered very quickly. It was stepping away from work. That was only possible for me initially because I had an existing financial safety net. And later I was able to tap into disability resources to help support me outside of my typical work.

Financial instability is a real risk facing people with disabilities, including those who have new onset disabilities and those who were or are career professionals. It can be an awkward topic to discuss, however. So today I'm really excited to share excerpts from my conversation with Kira Stoops. Kira is a writer and an advocate who has been living with a disability. She has a sub-stack called Imperfect Working Order.

where she talks about practical reflections on living with disability. She has a really honest and joyful tone. And in particular, she focuses on the realities of managing money with chronic illness. In our conversation, we talk about how to navigate disability benefits, how to build a community because that is such an important resource for us, and how to learn to cut ourselves some much needed slack.

This is a conversation that goes beyond the theoretical ways to live with long COVID. It talks about honest reality. So let's get started. First, Akira shares her story and how she realized just how expensive it is to live with a chronic illness.

Speaker 1 (02:35)
I have a disease called MECFS, which predates COVID coming onto the scene. So I have been sick for a very long time with scientific my entire life, and I have been disabled by chronic illness for the past nine years, just this month. So back then, there was not a big community of people ⁓ fighting these kind of mysterious more.

female diseases like ME-CFS, MCAS, Ehlers-Danlos syndrome, kind of the amorphous things that used to just get shuffled under anxiety. And so I made every mistake in the book myself. And of course, one of those mistakes was all the money mistakes that I made. ⁓ think that many people now are coming to lung COVID in their 30s and 40s.

which means that they are my age, which means they probably grew up in the same financial environment that I did, which was, you don't talk about money. ⁓ And so I already did not have a great financial basis starting out. And I think anyone, or not, makes financial mistakes in their lives. Like, we don't really understand how much student loan is coming out, or ⁓ we invest in the wrong stock, or we, you know.

put our money into the house or the business, it doesn't work out. But when you add sickness on top of that, I just don't think people who are well can understand how much it costs to be sick, even if you aren't really receiving that much care. And money is a massive tool for survival.

Speaker 2 (04:20)
There was a turning point for Kira. She missed out on a grant during the pandemic that she likely would have qualified for had she applied for it. It opened her eyes to the resources that exist once we find the courage to seek them out.

Speaker 1 (04:37)
One of the biggest turning points was understanding that I needed to ask for and accept help. And that was something I was extraordinarily resistant to. I was raised like super independent and I run my own business and I done it all myself up to this point. And in the pandemic, there was a grant available for small businesses like mine to get ⁓ new computers, microphones, monitors, whatever it takes to work more remotely.

and I just didn't know about it. And a bunch of my friends got the grant. they would have paid for me to get all new equipment, which I really needed. Slam dunk, totally qualified for it. Just didn't know about it. And part of the reason I didn't know about it is because no one talked about it because there's such a stigma around asking for help. So people that were close to me received this grant and I did not. And I really felt like I needed it more. And it was probably, you know, like.

seven or $8,000 worth of equipment and I felt like I just left it on the table. And I was so mad that I went out looking for other things that I qualified for and it turned out I qualified for a lot. There were more resources available in the pandemic. So that was the first place I looked since I'd missed that pandemic grant. But I also stumbled into just Googling like a little nonprofit, I'm afraid it doesn't exist anymore, but they were funding.

⁓ just giving personal funds to chronic illness patients to get the treatment they thought they needed. And there were no restrictions on it, they just paid LDU the money. And so that stuff is, out there. ⁓ You do have to dig for it, but I also think we have resources within our own community that many of us, myself included, are afraid to tap as well.

Speaker 2 (06:28)
So how do you get started asking for help and tapping into resources? Kira says, just get started.

Speaker 1 (06:37)
kind of feel like you just have to do it because none of the systems, the systems are designed to weed people out and to not help people who do not really need it. ⁓ And also understanding that I think, you know, there's always going to be people, a few people who take advantage of the system, but I would say overwhelmingly, in all of my patient groups, I'm a number of many, people resist help as long as they can.

I don't think there's a big run on these resources the way that we think there are. One thing I did was go for hospital forgiveness after paying, like scrimping and saving to pay for six or seven years in full. I just didn't realize there was a program and they don't offer that. They don't tell you, you kind of have to hear from other people.

But then as soon as I tried to apply, you know, the lady at the financial office was like, no, sweetie, you don't need to like completely ⁓ crucify yourself to pay our bills. Like we have a program for that. And I'm like, you could have said that, but they didn't. And so one of the things that I personally try to do ⁓ to de-stigmatize it is tell everyone, do not, do not pay your medical bills until you've checked in with the office first. ⁓ You know, or there's a grant for this. I think.

Sharing between ourselves some of these resources and admitting that we've used them is a really powerful step.

Speaker 2 (08:09)
Of course, finding resources, finding support is only part of the story here. The other part is fighting the internalized shame we might have, the awkwardness we might feel about asking for help, especially if we have not been in the practice of doing that before. We have to realize and admit that we might be fighting against some shame and feelings of perfectionism that tell us we shouldn't need help.

Rationally, it's easy to admit, but internally, it can be hard to accept the fact that disabled people are not freeloaders. We are using systems that society has paid into, that many times we have paid into, specifically for times like this and people like us. Anything that we can do to conserve our precious energy is not only a win, it's part of your recovery.

Once I started thinking about accessing resources in terms of my health, I realized shame has no business in this conversation, but it can be there. How do we become more compassionate with ourselves? Kira has some really straightforward advice.

Speaker 1 (09:31)
Are we allowed to swear on this podcast? My biggest piece of advice would be cut yourself a fucking break and that applies to everything you just said. If it's bills, cut yourself a fucking break on trying to figure out how to pay that. Can that office help you? Can you request help from one of your aunties who doesn't have any children? Is it time to crowdsource that one?

There's a social interaction that you want to have. Cut yourself a fucking break. Throw a beanie on your unwashed hair and just go as is. It's fine. Your friends will still love you. ⁓ Cut yourself a fucking break on the work front. I think anything that you can get done while you're sick still brings immense value. I am a professional copywriter and I am not putting my heart soul into writing in perfect working order perfectly. I am just getting it out and it's fine.

it's still very well received. ⁓ You just have to because we need so much more rest than, I mean, like it's almost not possible to get all the rest we need. So whatever you can do to just cut yourself some slack ⁓ is really important. And that's a very trite saying. And I think it's harder to implement than we realize because

I don't know any like chill people who got long COVID or ME-CFS or you know, the mysterious lady diseases. It's always extraordinarily hardworking, high achieving people. It's the hardest impulse for me myself to repress is just do not do everything 110%, just let it slide. And that's not something that happens overnight. That's something that for me has been a years long process.

Speaker 2 (11:25)
Kira mentioned that money is a tool for survival. Another tool for survival is community, and Kira writes a lot about this in her newsletter. This also takes work and requires some vulnerability. Kira shares how being radically honest about her needs, even when it felt scary, helped her build deeper, more supportive friendships.

Speaker 1 (11:49)
I feel like there's so many things I just don't have the answer for, but this is one that I do. And it is absolutely just opening up as much as it is humanly possible to open up about the reality of your situation. Our impulse as humans is to cover up being sick. And I think it's almost primal, tribal. ⁓ Most people are faking being well, they're not faking being sick.

And we do that with our friends, like we wanna show up, we wanna have the makeup on and the hair done and look more well than we feel and speak in positive ways and have it be like this fun interaction, but sometimes it just can't. So many of my friends, I was sick for years and many of my friends had no idea because I was able to hide it until I simply wasn't. And at first I would kinda try to tell them what was happening in the illness and they...

they wouldn't understand how they could help. And then slowly when I started identifying for myself the things that I needed and being more honest, it was like, ⁓ you just need dropped off at the door and then I go park the car kind of things, little things. But that honesty is what fosters the connection and the support. And I had to get to the point of saying like things that at first felt really embarrassing to me, like, ⁓

Can we not go out to a restaurant to hang out because, you know, COVID concerns or I can't eat anything on the menu, whatever it is. And my friends were like, yep, we get it, sure. And they were happy to help.

Speaker 2 (13:24)
It's important to remember here that not all relationships are going to survive your illness. It's okay if some relationships fall away. It's okay to prioritize depth of relationship over quantity. Community can be built from scratch, remain small, and still be meaningful and rewarding.

Part of adapting to a new life also means embracing tools that help us move and help us connect. For Kira, that meant letting go of her pride and accepting mobility aids. She also found creative new ways to work through microbusiness.

Speaker 1 (14:09)
could have moved a little bit faster was getting a mobility aid. I wound up finally using the wheelchair at airports and finally getting the Rollator and then eventually I was gifted a Liberty trike and it has just been so life-changing and I really wish that I had not waited so long. even if there is an aid out there that is not a perfect solution, because none of those things are, I still think it can be worth it to just get

Something to just give yourself a little break for being able to move around a little more easy. A rollator is, it's what you see people, elderly people with usually. It's a walker that has a seat on it and the seat flips up and holds things. Which I resisted for so long because I was like, it's the energy expenditure that's the problem. Like I don't have balance issues. Actually, that's not true. I totally have balance issues. I'm in denial about them. But the rollator is great because you can carry things with it. It's like a little cart.

and I flip it around and sit on it all the time. Like for example, we have a really great art fair here in Montana. And I used to walk around and look at the wares and just feel so dizzy and out of it. But now I can, you know, walk a couple of feet, sit down on my rollator, look at some pretty earrings, scooch along to the next booth. And it really helps. The Liberty trike is on my sub stack a fair bit. It is, ⁓ it's an adult.

trike that's thin enough to fit through doorways. So you can take it outside, but then if you need to like scooch into a grocery store or whatever while you're on it, you can go through and it's like, it's a little bigger than a mobility scooter, but it kind of serves that same purpose. And it's also lot faster than a mobility scooter, which is really nice. Cause they're just so slow. Why does it make you want to go a bit faster?

I am fortunate I have been able to hang on to my career in a way that I'm calling micro business. I was a freelancer throughout for the last 17 years. I have been a freelancer, a consultant, a contractor, whatever you wanna call it. I have not worked in traditional employment. And you think, oh, well, that's a great leg up for running a micro business as a sick person. But the truth was the ways I ran that

business before I was seriously ill were not sustainable going forward into sickness. I run my company completely differently from how I did before. And I would say my hardest hurdle has just been getting over my own perfectionism and desire to do everything to the 100 % that I could or 150 % that I could when I

was more well. think you've talked about that too in your newsletter, feeling like, know, I could see all these patients and I could hear their stories and really hone in on this one thing. And then I had to have my nine-year-old daughter show me how to hit the record button. I completely identify with that. And the thing I keep reminding myself and trying to remind everyone else is that most people do not need our 150%. Like our 75 % is

helpful, is so helpful. It can be just the value that they needed and wanted.

Speaker 2 (17:35)
I asked Kira what her goals are for her fantastic newsletter, Imperfect Working Order, and any advice she has for those of us with long COVID.

Speaker 1 (17:44)
I have not started it with a ton of vision, honestly. I just feel like there's a lot of little tips and tricks in my brain from my nine years of being super sick and then my lifetime of being moderately sick before that. I would just love to, you know, I'm really impressed with the long haulers. They have moved through the process so much faster of getting from, ⁓

realizing they're sick to finding care, to finding acceptance, to finding joy. ⁓ It seems like a lot of people are there already, even with COVID only coming out five years ago, whereas it took me so much longer. So I would just love to help accelerate people ⁓ through this journey, not skipping any important steps, but there was a lot of stuff that I went through that I just don't want other people to go through. I also... ⁓

We're applicable. I don't think it works for everyone, but I would love to help more people start micro businesses, start to feel like they can date again if they're not partnered. I think that's a really important message that I don't see people putting out that it is totally possible to date while very sick. And then build communities if they don't have them. I think a lot of us were not big on building communities and then the pandemic hit and now we need them, but we don't know how to build them. So

I just feel like I have a lot to share.

Speaker 2 (19:11)
Kira absolutely has a lot to share. Her story is a powerful reminder that survival is not weakness. Asking for help is not shameful. Building a life with chronic illness is messy and brave and worthy of joy. I wanna thank Kira Stoop so much for joining me on the podcast. I'm gonna leave links to her newsletter in the show notes.

What I really enjoy about Kira's writing is how she's so grounded in reality and humanity. It is not fluff. She talks about real life, pressing ⁓ issues and ways that she has navigated all of it. If this episode resonated with you, please give it a like or leave a positive review. Share it with someone you might think needs to hear it today.

Thank you again for listening to Long COVID MD. I'm Dr. Zeesd Khan, and I hope you're feeling well in this moment. If not, I hope you feel a little bit better in the next. Bye for now.