Amy shares her journey going from 12 hour work days as a lawyer to needing afternoon naps due to rheumatoid arthritis fatig
Amy shares her journey going from 12 hour work days as a lawyer to needing afternoon naps due to rheumatoid arthritis fatigue, and explains how getting diagnosed during Covid19 led to some additional stressors.
Amy shares what she’s learned while managing a fast paced, mentally taxing career as a lawyer while living with rheumatoid arthritis. Amy & Cheryl share their experiences in peer support groups, and explore how they’ve both learned how to challenge their internalized ableism and overcome shame through connecting with others in Cheryl’s Rheum to THRIVE support group.
Episode at a glance
- Amy’s diagnosis journey during the Covid19 pandemic– After severe fatigue, brain fog and pain, Amy gets preliminary diagnosed with RA by her primary care doctor but faces a long waiting time to see a Rheumatologist. She also experiences other challenges getting healthcare due to the Covid19 pandemic.
- Reflections on balancing a demanding career as a lawyer with RA, including a discussion about how and whether to disclose your disability in the workplace
- The importance of support: Amy discovers she doesn’t have to go through this alone after connecting with others on social media and joining Cheryl’s Rheum to THRIVE support group
- Shame, mobility aids and challenging internalized ableism: Amy shares how she’s gone from hiding her disability to having a pretty cane she can show off, but continues to face some challenges using mobility aids such as wheelchairs.
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts on April 2nd and registration closes on March 31st – sign up today!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Amy Bowers
Amy (@amymbowers on Instagram) is a lawyer and professor of legal writing, cat mom, and aspiring fiction writer who lives in Miami, Florida. When she’s not dipping her hands in paraffin wax or sitting statue-still with an electric heating pad wrapped around her feet, she enjoys watching TV, making cocktails, and coloring.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Amy’s instagram:
- Cheryl’s Arthritis Life Pages:
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
- Arthritis Life Program Links
- Rheum to THRIVE, 6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!
- Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Full Episode Transcript:
Interview between Speaker 1 (Cheryl) and Speaker 2 (Amy Bowers)
[Introductory music]
Cheryl 00:06
Hi, everyone. I’m so excited to have Amy Bowers here today on The Arthritis Life podcast. Welcome, Amy!
Amy
Hi! Happy to be here.
Cheryl
Great. Can you just start by giving the audience a really quick introduction to yourself, like where you live and what your relationship to arthritis is?
Amy 00:22
Sure. So, I am living in Miami, Florida right now. And I moved here about nine years ago, and I have been diagnosed with rheumatoid arthritis for about a year and a half.
Cheryl 00:34
Okay, yeah. And that’s — so we’re recording this in the end of January 2022. So, you were diagnosed during this worldwide pandemic, which I can’t even imagine. So, I would just love to hear a little bit of your initial diagnosis story. You know, what were your symptoms? And what was it like to be diagnosed during COVID?
Amy 00:56
Ooh, yeah, it was very hard. I didn’t know what was wrong, you know. I don’t have — so like, I have five sisters. And my mom is in her 50s, you know, pretty young and no one in my family has an autoimmune condition. One sister struggles with migraines, but I just didn’t know what was wrong. And my hands were like making, you know, into little claws, and I couldn’t open things, and my knees got so, so painful. And I was having a hard time walking or even holding my own weight up to stand. And obviously, I called my primary care physician as soon as I could and got bloodwork done as soon as I could. And he called me back and was like, “This looks like you definitely have rheumatoid arthritis.”
He sent me a referral to a rheumatologist. And they were so busy, I couldn’t get in for so long. So, I was just living on prednisone and a prayer, you know, just didn’t really get into the rheumatologist for the official diagnosis. But, um, you know, I did all that on my own in the pandemic, so that was very difficult. All of my family lives in Northern Michigan. And, you know, I was a single girl living in an apartment by myself that I had just moved into, and couldn’t even have friends over because it was COVID, wasn’t going to work because it was COVID. So, not seeing anyone, except for on Zoom calls, and FaceTime with my doctor to try to figure out what’s going on. It was very difficult. It was very isolating and confusing, and I just couldn’t imagine that this was how it was going to be, at least until I saw the rheumatologist.
Cheryl 02:55
Yeah. Wow. So, you were — it was like, in what month was it?
Amy 03:00
That was in, I would say, August 2020.
Cheryl 03:07
Yeah. 2020, yeah.
Amy
Yeah. 2020.
Cheryl
Yeah. Oh, my gosh. Yep. So, the pandemic at that point, there was still so much uncertainty, like, are we about to be done with this, or, I mean, I can’t imagine. I mean, you’re just describing what you went through, but being on your own and then not really having the expertise of a rheumatologist to guide you through understanding it. How did you even get information about rheumatoid arthritis? Like, did you Google it or how did that work?
Amy 03:38
Yeah, I spent a lot of time on Mayo Clinic’s website and then the Rheumatoid Foundation’s website and just trying to learn but honestly, the resource that was the most helpful for me was Instagram. That’s how I found you. And I found out about the program that you run, Rheum to THRIVE, and social media which like I have — I’ve never been, like, I always am bad at Instagram. I don’t — I post pictures of like my cats and flowers, like I don’t post content people want to see, like I’m not —
Cheryl
I love your cat videos.
Amy
But I love Instagram and Tik Tok just for like, connecting with other people because you know, it was such an isolating experience. Social media, like seeing people, even like especially people my age that are dealing with being newly diagnosed, you know, I learned a lot from them. I learned a lot from you, other people, especially on Instagram, that if it was a simple life hack, something to make my life a little bit easier, things that you know, can alleviate pain that’s not medicine, you know, that was super useful in that weird time period while I was just like waiting for my diagnosis, but definitely had RA. It was very helpful and honestly, I don’t know what I would have done if I — because I didn’t know anyone with it and I wasn’t able to really talk to anyone, you know?
Cheryl 05:05
Yeah. And you’re also, all the while this is happening, you’re working a very demanding career, right. So, you’re trying to work. Can you tell us a little bit about your career?
Amy 05:17
Yeah, so I had actually started a new job in March of 2020. So, I had started working at a big, like a national law firm, and was five months in when I got the diagnosis. So, I’m right now I’m 35. So, at the time, I was like, you know, 33, and like a seventh-year associate. So, you really want to crank your hours, get it all in, if you want — if you have aspirations of becoming a partner, especially at a firm like that. There’s, you know, a lot of value is placed on billing a lot, helping out partners. And when I got sick, it was just — it was just, I couldn’t work. Like, I had never experienced anything in my life like that. I am super energetic, I’ve never had a problem with focusing, never had a problem working long hours. I would be happy to do it, you know, like, formerly, you know, preparing for trial before I got sick. Like, you know, two weeks of 12-hour days, no problem, like whatever it takes to get it done. So that, you know, that’s just kind of expected when you do the type of law that I do.
And when I got sick, it was. I mean, honestly, thank God it was during the pandemic, because work had slowed down so much, and I had just started this job. So, it was like before I got on-boarded to a lot of cases. So, I could sleep like hours and hours in the middle of the day. And then, once I eventually did get into the rheumatologist, I think I was put on methotrexate right away. And I would be doing Zoom calls or something for work and feeling a little bit better generally overall, and then just like have to leave a Zoom call to go like, be sick, throw up, like I just — my body was not tolerating it, and just that whole process of being so fatigued, not being able to focus, not being able to work. I knew, if I didn’t start feeling better very quickly, I would lose my job, or I had to leave my job. I just, I did not feel like I had options. And working at a larger firm, you know, there’s a very big HR department that, you know, they focus on diversity and inclusion, and you have like a mentor assigned in the firm and everything from a distance looks there are resources there when you’re going through a crisis to help you. But when it’s happening to you, and you’re so tired, you can’t even function, and you’re stressed out and you’re in a lot of pain, those resources are just — they’re just not, they’re not adequate.
And that was a very hard lesson to learn was like, HR is not your friend, you know, like, it’s not a charity, it’s a business. And while you have met nice people or smart people, capable people, and people have appreciated you helping them or whatever, they don’t care about you. You know, that’s a very hard thing, that was hard for me to learn because I care so much about people I work with. I think that’s just normal, especially, you know, living in Miami not being from Miami. Like, that’s where I’ve met all of my friends, is at work? And, you know, when that happened to me when I was — my hours were abysmal. I was not able to work. And it was, you know, made very clear to me like, this is not gonna, it’s not gonna work out, you know?
Cheryl 08:57
Yeah, I can’t even imagine how hard you had to work for your career, you know, to get to where you were. And then to have all of a sudden, like, through no fault of your own, you know, you’re working just as hard as you’ve always worked and doing what you’ve always done. And then all of a sudden, you start getting hit by this, you know, fatigue, brain fog, joint pain, and then having to function during this totally uncertain time of the pandemic. And I’m wondering, did you have to tell, or did you have a difficulty figuring out who to tell about what was going on? Like, did you disclose or did you not; how did that work?
Amy 09:44
Yeah, so, as far as the people I told, at the time, I was staffed on like this one really big case. And there were two women shareholders or partners that were pretty much managing the case. And I told them, because I was taking these Zoom calls, you know, with the team and getting assignments and trying to figure out who’s doing what and when, and just, you know, talking about case strategy type conversations. And it was like, very obvious to them and me that I was just confused. And for the first time, like, you know, not having like, not having like quick remarks or status updates, and just kind of being slow in responding, not remembering things that I did, just things.
You know, you really need to be detail oriented to be, you know, litigation counsel, and it just — it was very obvious there was something wrong. And so, after we hung up a call where I felt a little bit like, you know, almost bullied or just not welcome or that I was not, you know, up to the level that I needed to be at just in my communication skills, I told them. I said, this is what’s going on, you know. And they didn’t know anything about the condition; they didn’t know. So, I had to explain to them this is how I feel, you know, I don’t think I’m gonna feel like this always. Once I find medications that work for me, I’m very confident, I’ll feel better, I’ll be back to normal, you know, like, please just be patient with me while I and my doctors, we try to figure this out, kind of troubleshoot. So, you know, I’m sorry, but please be patient with me. And I swear, I’m trying as hard as I can. And I hope this will just be like, very temporary, you know.
And I did tell HR when it became evident to me that this was not going to be a quickly resolved situation or quickly improved situation, I talked to HR, and they’re like, Well, have you considered short term disability, and here’s our policies, and, you know, you could take this much without pay and this much with pay. And it was just like, I did not have the emotional strength to deal with that. I just, I couldn’t, I couldn’t accept, like, taking a disability leave. I just — surely it’s not that bad. Like, it’s gonna get better, you know, and, and honestly, at the time, because it was the pandemic, and bigger law firms were kind of reactionary during this period, a lot of the partners who would normally have downshifted work on to me to handle as a senior associate started handling it themselves so that they can make more money for themselves, and have their hours a little bit higher, and their bonuses a little bit bigger. So, it actually kind of worked out, because there wasn’t a huge expectation for me to bill a lot. But, you know, it was evident that it was still, the work that I was doing was not the same quality work. And that was very difficult for me, because I take a lot of pride in what I do. And I worked very, very hard to get to where I was.
Cheryl 13:11
Yeah, I think so many people listening can relate. I mean, I’ve had so many of the same thoughts. I haven’t worked in what I would consider as kind of cutthroat a field as law. But it’s, really, you know, when people hear rheumatoid arthritis, and they just think ‘joint pain’, you know, these kind of stories, hopefully, are so illustrative to them that this is so much more than that, right? It’s not just more symptom wise, in terms of, you know, brain fog and brain inflammation and fatigue and systemic inflammation. But it’s also, you know, the ripple effects it has on your social life, your work life, your sense of self, and your sense of self-concept. And yeah, I just, I just feel for you that you had to go through all of that on your own during a pandemic. I just, I’m just in awe. Everyone who’s going through this right now should just give themselves a little bit of a gentle pat on the back. Did you find that the initial two people that were overseeing the big project you were on, when you told them, were they understanding or —?
Amy 14:22
So, I think were just so busy and stressed that they didn’t have the bandwidth to really, you know — it just, it was I’m so sorry you’re going through that. Thank you so much for sharing with us. Like, if you, you know, need to take a day off or whatever, you know… They say all the right things like, but it was just a very kind of surface level, you know, we’re sorry you’re going through that, you know? And I mean, I kind of understand. It’s a business, you know, like, they have requirements placed on them to manage, you know, more senior attorneys like me. And I basically told them like, you know, I have an unmanageable problem at this moment. I just don’t think that they were equipped, really, they certainly weren’t trained. But, you know, what are they supposed to do? There’s no — it’s just, you know, I’m not sure anyone else could have handled it differently, or better. I don’t know, there aren’t like guidebooks on how to deal with this, especially in like, a corporate environment. And it’s just, yeah, it’s a shame because I really felt — I, you know, I just felt like, I have to get a different job.
Cheryl 15:47
Yeah, yeah. And so, yeah, how have you — how have things evolved in the year and a half since then, job wise?
Amy 15:55
So, I went to a firm that does not have a billable hour requirement. At least not one written down. I mean, there is kind of a suggested one.
Cheryl 16:06
And can you just explain to the people whose — I have friends who are lawyers, so I kind of understand, but can you explain to the audience who maybe doesn’t know with what is a billable hour? What does that mean?
Amy 16:15
Okay, so basically, one hour of time is broken up into little increments. So, if you spend six minutes on a task, that’s a 0.1. So, through the day, you’re doing 0.1, you know, two hours on a memo is 2.0. And at the end of the day, you add it all up, and you should have, you know, my minimum at the point at that point was 7.2 hours a day, okay, of billable time. So, that means, you know, pro bono work doesn’t count, or business development things don’t count towards 7.2. And when you spend too long doing a task that for somebody with your experience, then you kind of, you know, sometimes you like self-monitor, and you give yourself, you know, something took you 0.8 that should have taken you 0.5, so at the end of the year, it should be, you know, 2000 hours total billable, or whatever the different firm, different firms have different requirements. So, I left a job that had an hourly requirement, and I took one at a small firm that did not have a billable hour requirement. Just because I thought that could that would be kind of low hanging fruit to take some stress off of myself to not have, like a firm line in the sand that I, you know, that I have no power to change, you know?
Cheryl 17:48
Yeah, yeah. So, how has that gone? Like, have you been able to have a better like — I know a lot of people don’t like this phrase — like ‘work-life balance’, or just overall, you know, balancing your health with career? How is that going now?
Amy 18:05
It’s going a lot better. I think one of the central differences is that I came into the job I have now and told them from the beginning, you know, that I had a diagnosis. And I asked, you know, please, like, I might need a little bit more time in the mornings before I can speak, it might take me a little bit longer to get up, if I’m not feeling well, I might go home or work from home. And for the most part, as long as I get my work done, it doesn’t matter what time of day I’m doing it, which is great. And we’re in a hybrid schedule. So, I go into work on Mondays, Wednesdays and Fridays, I stay home Tuesdays and Thursdays. And masks are required to be worn in all kind of common spaces. And I felt I have felt a lot better since starting at the smaller firm. Just, you know, emotionally, physically, mentally, everything has kind of, because it’s just, time has passed, you know. I’ve had a lot of time pass. And I think that starting this new position, kind of clean slate but with transparency, you know, like I have some health issues, they might affect some things, but like, understanding that they are going to be flexible enough to kind of accommodate that has been a huge relief for me and it has enabled me to be better at my job, I think.
Cheryl 19:37
that’s amazing. And I think that that’s a really hard thing for a lot of people to do, is to have those initial conversations. Were you worried when you first brought that up? Like, your needs up, that they wouldn’t be accommodating? Or emotionally, how was that?
Amy 19:55
It was so scary. It was very — I was so scared because I knew in the long run, like I needed to be honest, because I knew, you know, especially because it’s such a smaller firms and boutique practice. So, if one person drops a ball, somebody else needs to pick it up immediately, you know. You’re working, it’s like a team-based position. So, I didn’t want to come off as being like, you know, yeah, you’re gonna hire me, but you know, I’m not able to do all the work. Like, I was confident I could do all the work because I was feeling better, and able to do all the work. But you know, I was interviewing, walking into the interview in flats with a limp. Like, you know, I knew it was obvious there was something wrong. So, I was scared about that. And then I was, you know, embarrassed, like, I shouldn’t feel, you know, I shouldn’t feel embarrassed or nervous, like I should, you know, the only person making me feel this way is myself. Like, you know, all these thoughts that go through your head. And it was just, it was a very anxiety-ridden time. And I was very glad that most of the interviews took place over Zoom, because, you know, it’s not so easy to perceive. But then I felt bad about that. So, I mean, it’s just, it was difficult. It’s just like, it’s a never-ending just like uneasiness, you know?
Cheryl 21:17
No, you’re describing it — I so relate to that. Yeah, it’s like, there’s so many benefits to doing things virtually now if you have a disability, right? Because it’s not as maybe visible. But then, like you said, or maybe I’m putting, I don’t wanna put words in your mouth, but it’s almost like you don’t want to be like a bait and switch. Like, oh, yeah, you kind of assumed that I don’t have any limitations. But actually, you know, I do. And yeah, it’s just, it’s a very difficult thing. And I’m glad that you talked about how scary it is, because I think it will help others who are in the same position to hear that, you know, you can have those scary conversations, you can do hard things. And now, you are — not to be like, wrap it in a tidy bow. But like, you did, you pivoted your career in order to support your overall health and well-being. And, you know, that is that something that I know a lot of people end up doing, you know, whether it’s — you’re obviously still a lawyer, you know, you weren’t like, “Okay, I’m gonna go do something totally different,” you know, but you switched your specific workplace. And did you change insurance too? I feel like that would be so stressful, any change in insurance. We’re in the US, so.
Amy 22:33
Let me tell you, I, thankfully, luckily, my new employer had the same insurance company, from my old employer. I mean, obviously, different policies, and different levels of coverage. But at my new position, there was my first month, my insurance wasn’t active yet. So, I couldn’t get — I was doing infusions twice a month at that time, so I didn’t have two infusions. And then, a month after, I was so desperate, and it was still lagging a little bit, I paid cash for an infusion, and sought reimbursement afterwards. But, and, and my doctor has helped me before, I think. Thank goodness, I knew beforehand that this was the case. So, I was able to get a lot of my prescriptions filled in advance. And that was good. But yeah, it was very bad. So, right when I started, I was using a cane, I was having a very hard time with pain. And, you know, I wonder if my employers thought like, “Oh, this is way more serious,” you know, but it was just, I think, kind of a short-term ramification of a very stupid insurance policy. Like, I’ll never understand that, why you have to wait a month, you know, that the administrative headache of making like, in case somebody quits within a month, like, whatever. But it was horrible.
Cheryl 24:05
I’m so sorry. Well, and I think that one of the most frustrating feelings for me, and I think of many others, is suffering for no good reason, you know, like, because you’re like, I know what’s going to help alleviate my suffering, it’s getting the medication. So like, the fact that this is being delayed for maybe not no good reason, like I was thinking about, like shortages during the pandemic, like there’s a lot of people right now on Actemra who aren’t able to get it, you know, and that the reason is the pandemic. But it’s still frustrating to just be like, I want to do everything I can to feel the best that I can and I’m being stopped by these forces out of my control, you know, and it’s part of the overall process of living in a body that’s like to some degree out of your control, you know. You do the best you can and then but, you know, sometimes you get hit with a flare or you get hit with pain out of nowhere, and so I’m glad you eventually got back on your medication regimen. So, do you mind sharing what your management of your RA looks like today? Like, you don’t have to say the drug names if you don’t want or you can. People are always just curious, you know, to hear other people’s stories.
Amy 25:16
Yeah, sure. So, I do an infusion once a month now. Unfortunately, I am allergic to — I’ve tried two different infusions, infused medications, I’m allergic to both. I don’t know. So, I’m sure we’ll try something next. So, I’m on prednisone right now to treat the allergic reaction. I don’t like prednisone because I hate taking prednisone. And then, I take hydroxychloroquine which was super fun to try to get during the pandemic. Yeah, and then, um, you know, I take vitamin supplements. I’m not convinced they do anything for me. And I know I’m forgetting something else. Oh, I take like an NSAID, you know, just like a pain reliever or prescription strength pain reliever every day. And at night, I take a muscle relaxer. And that’s super helpful for me, a strong muscle relaxer, because I have really bad spasms in my back, and a lot of just muscular pain in my back. So, that’s been heaven sent. And then I always tell this to people who are struggling with brain fog and fatigue, it has literally saved my job and probably my life, I take Adderall. I take Adderall. And I feel like so much better. I, as I said, I don’t have any problems focusing; that’s never been a problem with me, thank goodness. I’ve never had any type of attention deficit problems like that. But it’s a stimulant, and I just feel awake. And I noticed after I started taking it, my sense of humor came back because I was able to quickly react to people saying things, and I just, I feel so much like myself now. And I credit it 100% to Adderall. Without it, on days when I don’t take it or if I forget and take it late or something, I’m right back. You know, it’s so — it’s just a palpable level of fatigue; it’s debilitating, you know, so I love my Adderall. I am the Adderall evangelist. I think anyone who’s listening who’s suffering with brain fog and fatigue, to have a conversation with your doctor about stimulants because I found it so useful.
Cheryl 27:34
Yeah, and that’s one of the things I never even learned about until you know, being on social media groups, that it’s, you know, a lot of rheumatologists or even primary care doctors will consider if it’s appropriate for the individual patient, you know, whether Adderall could be, or another stimulant, could be helpful for their fatigue. And even, like you said, even if you don’t have a diagnosis of ADHD, you may be able to get that to help with the fatigue. And that’s, I mean, something, you know, we want to throw everything we can at these things, right. Like, I think, in general, the medications that are available tend to really target the joint pain and inflammation, and they don’t always target the fatigue in the same way. Like, initially, the thought was, well, everything’s driven by the same underlying cause. So, if you improve just overall inflammation, it’ll improve, you know, through the medications, it’ll also improve fatigue, but that’s not the case. Like, fatigue persists even when inflammatory markers are down for people with RA. Not all the time, but a lot of the time. So anyway, long story short, yeah. I think that that’s a great tip for people to learn about. And then, what are some of the other things like your daily tips, like I know that, you know, in our Rheum to THRIVE group, I kind of walk people through different non-medicinal ways of coping, and life hacks, pain management, all that. Do you want to share any of that, maybe the stuff that you’ve learned there or learned on your own because patients become the experts in their own care, too.
Amy 29:09
Yeah, so I mean, this was — I love talking about that in Rheum to THRIVE and just learning what everyone else has learned and then kind of just, you know, getting together and sharing them. It’s been — it’s been interesting, like things I never thought of. Like, I have a paraffin wax bath. And I remember after one of our discussions in Rheum to THRIVE, someone’s like, “Have you tried putting your feet in?” And I was like, “No,” like, I don’t know why — my feet hurt, like why didn’t I try that? So, I tried that and it was amazing. I’m very into — I’m very into my bathtub. Like, this is, it’s the love of my life. I’m looking at apartments, I have to move soon. And these apartments don’t have bathtubs, you know, they’re like, young people I guess in cities don’t want bathtubs. I want a bathtub, it’s not negotiable. Lots of things. A little bit of exercise. I know everyone always says a little bit of exercise. Um, so that’s been kind of an interesting thing for me. I remember when I was diagnosed, I would order delivery and walking from my bed or the couch to the door to pick up the delivery that’s like brought up in my building to my door was a challenge that would take me like, you know, five minutes or so. And then like, my next challenge was walking to the pharmacy. And I could walk there, but then I’d have to get like a scooter back and it’s like, you know, four city blocks. Maybe it’s not that far. But now I can walk to the pharmacy and back, I can walk to the ATM to go get money, I can walk to go pick up food, I can certainly walk to the door to get my delivery. You know, so that’s been interesting to me, like just kind of pushing myself more and more over time. It’s been like over a year and I think there is something to be said for like a tiny bit of exercise, whatever is like, whatever you can handle, even if it’s just walking into your apartment or standing while you cook. I mean, that’s — it does alleviate some pain. Yeah, we talk a lot in Rheum to THRIVE about weighted blankets. I love my weighted blanket. I love my little compression gloves, which I know you rock a lot.
Cheryl 31:26
Yes, yes.
Amy 31:30
I wear them all day at work typing, when I get home I’m wearing them. I love to color in coloring books, so I wear them while I’m coloring and it helps a lot. So, I have lots of little gadgets, you know, around to help me open jars, that type of thing, because I like to cook a lot. So, yeah, I’ve learned a lot, mostly from people on the internet. And people on the internet just, you know, things I can do to make my life a little bit easier and more free of pain, and also just to kind of be able to relax, and not think about pain. Just relax for the mental component of it as well. It’s been useful.
Cheryl 32:15
Yeah, absolutely. And like, you know, so many people during the pandemic felt isolated, you know, whether or not they have a chronic illness. It was just like an epidemic of isolation, right. But, you know, having to learn how to cope with a chronic, autoimmune, complex, you know, illness, and like you mentioned, when you were diagnosed, you’d never known anyone or met anyone your age. So, what has it meant to you to have like — and Rheum to THRIVE, we talk about the tips and tricks, but we also have that time in each of our weekly meetings for the social support, and just the general kind of traditional support group style, like, so what has that, I guess, meant in your journey?
Amy 33:00
It’s meant, honestly, like, that has meant so much because it is such an isolating illness during an isolating time. And all of us are kind of grappling with isolation. But honestly, like, I’ve learned so much about other people’s lives, and the fullness of their lives, and the richness of their lives, that they’re able to kind of achieve and manage with this illness has been so super inspiring. I mean, there’s young moms in our group, there’s people who are a lot older than me but still dealing with the same themes and the same anxieties, and, you know, different anxieties that I can certainly empathize with but haven’t lived in. It’s just been, you know, how do people at different life stages in different social situations, different types of relationships, like how have they all managed it? And it’s just been — it’s been so lovely, just to see, like, you know, this does not need to be, this does not mean that you’re going to be alone for the rest of your life. I think that was very challenging for me. Because at the time of my diagnosis, I was going through a divorce and it all just happened at the same time. And now in in our discussion groups, you know, I learned I’m not — first of all, not the only person to have an RA diagnosis that’s gone through a divorce. And maybe theirs didn’t happen all at the same time. But, you know, some people are going through a divorce and their RA diagnosis, or ankylosing spondylitis diagnosis, or some other autoimmune condition has certainly played a role in that relationships trajectory.
And being connected with people who have kind of been, you know, dealing with managing RA, receiving a diagnosis, an autoimmune diagnosis, and kind of their social support system falling apart, has been super helpful for me because it’s like, okay, well, life doesn’t end just because that relationship ended and because you have a difficult diagnosis. Like, your life is gonna go on, because look at these people around you. And they’re doing okay, you know. Or maybe they’re not doing okay today, but next week when I talk to them, they’ll be doing better. And they’ll have some type of wisdom to impart to others and strength to give to others. And that’s just been like, honestly, like, such a ray of hope. Because, you know, you get in these routines, and when you’re alone all day, and everyone’s kind of going through pain, it’s a very painful time right now, for everyone, I think. You kind of think like, this is it. Like, this is what life is now. And it’s not true. And I’m being connected with other people who are going through the similar themes, and, you know, are truly learning how to thrive, not because of but despite a hard diagnosis or, you know, a divorce or getting, you know, having a career change, not being physically able to do what you want to do. It’s just been — it’s just been so wonderful, and just makes me so much more hopeful than I ever thought I would be. So, at the start of all this.
Cheryl 36:32
Oh, wow, that’s amazing to hear. And I mean, one of the things that keeps coming up for me in the group, and even as like I’m facilitating the group, but I also am going through rheumatoid arthritis myself. And it’s like, so often we feel like we’re the only one, right. Like, so often, even if we’re connected through social media and other things. It’s like, you kind of have this moment when you’re about to share something with a group where you’re like, “Oh, my gosh, I’m just silly. I’m just being so silly.” And then, inevitably, whenever anyone else brings something up, or they’re thinking, “Oh, my gosh, like, I’m the only one,” there’s everyone else like, “Oh, no. Like, me too,” you know, or it’s just, we tend to be the hardest on ourselves, right. So it’s like, when we say something, “Oh, I can’t believe I didn’t do a better job,” like, there was a one person who was talking about that they didn’t advocate — in their mind — they didn’t advocate well enough for themselves during a medical appointment. And it’s like, having people in the group, say that you did the best you could and then you could still — the time to advocate isn’t over after the appointment. You can send a follow up, you know, voice message, or MyChart message, or whatnot. And just like, yeah, just that ability to have people who just get it on that logistical level. Like, all the challenges of like insurance, and, you know, disclosing or not disclosing at work.
Anyway, it’s been, yeah, it’s been amazing to watch. And I didn’t know when I started, you know, Arthritis Life that there would be a pandemic, right. So, I was just thinking about doing online programs, because I could just — it would be, I’d be more able to serve lots of people in different areas instead of in person. But then, once the pandemic hit, I’m like, “Oh, this is really necessary now,” like, this is not a nice to have, this is like a must have. But yeah, and I know even like when you’ve brought up things, like you mentioned using a scooter, you know, so many people, especially young people — however you define young — you know, young appearing people, people who are not basically appearing elderly, often feel shame around using any sort of mobility aid; a cane or scooter, or even a compression glove. So, like when you say, “Oh, yeah, I use that at the store,” it’s so powerful other people to hear that, right. Because they’re like, “Oh, I didn’t know if I should, or I could, or is that — are people gonna look at me weird, like, you don’t look sick, you don’t look like you need that,” you know, so. I forget where I was going with that, but.
Amy 39:01
It’s okay, I can talk about that. I mean, I really struggle, especially with a cane. So, as a treat to myself, I got this really fabulous, hot pink cane. Looks like a flamingo, I love her. And, you know, I don’t need it most days. But when I’m walking like, usually like vacation is a great example of when a cane is great, because it’s a lot of walking or more walking than I typically do, that I probably shouldn’t be doing. And especially like on hard surfaces, like museums or sidewalks, you know, it really is difficult for me. My knees get so tired and it just feels like I’m going to collapse, you know. So, that has been very hard for me to kind of accept, but I think by having a pretty cane, it’s like, you know, you have to look at it. Like, everyone look at it, you know? And I’m not trying to kind of like hide it. So, it kind of gives me a puff of confidence, that, you know, I don’t have at the moment but it’s like, it kind of is like a fake-it-till-you-make-it thing and it’s like, you know, someday, I’m going to be proud to walk with this cane because the cane is cute, you know, I look cute with it. And anything I can do to make myself feel a little bit better, I think, is I’m going to welcome it. And what I really struggle with is accepting wheelchairs. And I’m really, you know, trying to work on that.
So, this year was the first time that I tried a wheelchair at the airport, because I had a horrible experience. I was travelling with friends and I went through regular, the regular line, it didn’t look like it was too slow or anything but they closed down one of the machines, and so there’s only like one of the security systems running. So, I ended up having to stand still, for a long time carrying a backpack. And I would — my body was ruined for like, a day. I couldn’t do anything. So, I learned, you know, a lesson — a very hard lesson — the hard way. And so, I’ve become, you know, open to using a wheelchair, at least through airports. And my goodness, it has completely changed the travel experience for me. It is unbelievable. And I’m just, you know, kicking myself, like, why do you have this, you know, issue with accepting a mobility aid? You know, why do I feel the way I do? And I think part of it is, I think people are gonna look at me in a wheelchair being pushed around by somebody and be like, “There’s nothing wrong with her,” you know, and that I don’t, that I’m not sick enough to have it, or disabled enough to have it. Because there’s nothing obviously physically, you know, wrong with me, you know. But I don’t know. I’m like grappling with that. There’s a lot of like, you know, internalized ableism that I’m still dealing with, but necessity is a great teacher. And so, you know, it’s kind of like deal with it or not. Like, this is happening. So, you know.
Cheryl 42:23
I totally, totally get it. And I think there’s so many layers of complexity to it, because I think, yeah, it starts off with just most of us have grown up with a lot of ableist messages, you know. And like, people in wheelchairs — in the messaging that I think is incorrect — they are people to be pitied, and they are people who, you know, that they’re not there, if you have to use some ability aid, you’re less than in some way, you know. So then, there’s your own kind of often resistance to using an aid because you don’t want to be seen as less than. And then, there’s also living with a condition where you’re in that grey area. You’re not paralyzed, like, you can walk a little bit, right. But you’re not at the point where you can just walk kind of unencumbered by any limitations. Like, you have limitations in how long you can stand and walk. But most people think in a very black and white way; like, you’re either 100% disabled and you need a wheelchair, or you’re 100% able-bodied. Like, there’s no in between. So, you know, I would, what I tell people, if who are worried about people judging them is, they will judge you. They will. You have to just look that in the face and be like, okay, so I can either be judged while taking on a behavior like using a mobility aid that helps me or I could be judged by, and then, you know, not viewed as something. But it’s like, either way, people are judging each other constantly.
And so, you know, I just, I think it’s so important to just take that stand for what you need in the moment, you know, and like you mentioned, take the power back. Yeah, and be like, I have a cane. It’s awesome. You know, it’s pink. I do hope that one day our society has a better framework for understanding invisible illness, invisible challenges, you know, because there’s so many reasons somebody could lack stamina. Now there’s long COVID there’s cancer, there’s multiple sclerosis, there’s so many, so many reasons, you know, or ways. One thing that’s a little tiny bit of an in between measure that sometimes I will tell people, look if you’re really having a hard time, like — and this is this is gonna be controversial, okay? But like, sometimes if I’m like, I don’t wanna have to explain this 20 times like, you can put something on that’s like a visible thing. Like, you could put on a knee brace. Maybe if you don’t technically need that knee brace, you know. Or like, I have some like, heavier duty hand splints that I used to need more often. I don’t currently need them, but it’s like, if I don’t want to have to sit there and explain to everyone in the airport why I can’t do something, just put that on, you know. Again, that’s controversial because it’s like, you don’t want it to in general being like faking disability, obviously. But it would be for like, as a short-term measure to get you through a unique situation like an airport, you know. So, just a couple thoughts.
Amy 45:19
I wish there was like, you know, when children travel by themselves, and there’re like, ‘Designated minor’, like the little cards, the placards?
Cheryl 45:26
Oh, there is one. Someone made one. It’s a sunflower lanyard. Like, the sunflower lanyard is for invisible illness. I’m so glad you reminded me of that. But again, it doesn’t —
Amy 45:39
That’s a great — it’s a great idea that obviously somebody had before me, and I hope it becomes widely known and accepted, because I think that would be awesome. Just some type of way so I don’t have to have the additional burden of explaining why I am utilizing a service that’s available to the public.
Cheryl 45:58
Right. Right, right. Yeah, like, I know there was a time in the group that we were talking about, like Disneyland, and, you know, that someone was saying — and I know, right now, obviously, Disney is difficult because of the, you know, infection control. But that, you know, that they tried to do Disneyland for the first day without using any mobility aids, and it was just a disaster. And it’s like, the next day, they used a wheelchair, and it was so much more enjoyable. So, you know, it’s like, you know, trial and error; you have to meet yourself where you’re at. But it’s certainly, just for anyone listening, you know, you don’t have to wait until it’s bad enough to justify needing a mobility aid. Like, if you need it, you need it, you know. You’re the one you’re the best one to judge that.
Amy 46:50
This is going to like — I’m probably going to hate myself when I hear this recording back for talking about this, but — and it’s extremely privileged and I know how this sounds, okay, just everyone listening, I know how it sounds. But if you are fortunate enough to be able to afford things that provide you comfort, that’s been a very key thing for me. Like, don’t feel bad. If you can afford to upgrade to first class, upgrade to first class. If you can afford to get the nicer hotel room with the nicer mattresses, do it. Like, if it’s not going to break the bank, and, you know, and if you’re fortunate as, you know, other people and you can afford it, and it’s fine. Like, I’ve had to kind of like just take from my mind the idea of like, just like, you know, like this one will be okay, it costs less, so I should just do the cheaper thing. Like no, because, for example, a flight, there’s a huge difference in how much I’m going to enjoy my vacation if I’m flying coach versus first class. I seriously will take an entire day to recover just from the stiffness of sitting in coach. And I’m a small person, you know, but it’s just, it’s so uncomfortable. And it ruins the next day. So then, I’m thinking of well, I need a whole day of my vacation. My hard won, you know, deeply earned vacation to kind of deal with, you know, travelling. It’s like, no, just pay the extra money and do first class, if you can, you know. If that’s something that’s in your reach, just do it and don’t feel so bad about it. Like, you don’t always have to do the cheap thing. You know, and that’s just been — that’s been a hard lesson to learn too, because, you know, but what I’m learning is like comfort is very nice. Like, it’s very, very nice.
Cheryl 48:42
Oh, totally. And I, yeah, I do feel privileged when I talk sometimes about like, the different gadgets I got. I bought gloves that are over $100 that are electronic, like battery recharged, heated gloves.
Amy
Oh, my God.
Cheryl
They have changed my winter completely because I always — I love like the thought of going out on the snow and playing in the snow. But I have pretty bad Raynaud’s on top of rheumatoid arthritis, which means that my vascularization to my fingertips when it’s cold just goes away, and my toes too. So, but yeah, it’s like, you know, the worst situation is to get the thing that you need and then feel bad about it anyway. Like, so yeah, of course I wish that everyone with rheumatoid arthritis could afford first class and could afford all of everything. The paraffin bath, the infrared sauna — I know someone who has one of these — you know, there’s so many things you could invest in, like a weighted blanket and everything. And then, I think — I think people are gonna hate me for saying this — I mean, certainly, jealousy is a normal reaction when someone has something that would bring you comfort that you can’t afford, but I don’t think it’s inappropriate to share that that’s brought you comfort and that you see it as your worth. If you have the resources, it’s worth investing in yourself, and you shouldn’t feel guilty and in that. I almost, I’m at the point where I see my shoes as like a health investment pretty much. With COVID, it’s been easier because I’m not having to walk around in like, shoes that are — what’s the word, I don’t even know what the word is now — like, pretty shoes. But um, but you know, supportive shoes. If I don’t wear supportive shoes, I’m gonna actually feel my feet are gonna hurt a lot more. So, you know, things like that.
Amy 50:28
And convenience, too. I’ve become so just happy to pay for convenience, like, having my groceries delivered to me. It’s $10, right. But it’s, I order on Amazon and then, you know, my groceries come delivered to me, I’m not risking exposure to people in the grocery store. I don’t have to deal with heavy bags, you know, getting in an elevator, all those things. I mean, it might sound like, well, everyone does grocery shopping. It’s not a big deal. It’s like, yeah, but like, if I do grocery shopping, that takes a lot of my energy. And it’s very draining, and then I’m anxious about being around people indoors. And it’s just, it’s $10. You know, it’s all right, like I can afford it. And that’s like, you know, giving myself permission to kind of spend the $10 here or there to make my life easier and more comfortable and more convenient. Like, it’s money well spent.
Cheryl 51:21
Yeah, yeah. Absolutely. Oh, I hope that this is inspiring to people. I feel like it’s like, I’m always — I feel bad, I’m always encouraging people to get more gadgets.
Amy 51:32
I mean, I need to rein in the spending, though. I mean, I think there are so many things you can buy for RA. So, you don’t have to worry you’ll run out, so.
Cheryl 51:41
I’ll let you know when I get to that point. Yeah, no. And so, this has been so, so great. And I always like to ask other rheumatoid arthritis, you know, people, patients — I know some people don’t like the word patients, it’s hard for me to get out of the habit of seeing patients because I like being referred to as a patient when I’m talking about my healthcare experience as a patient, because that’s just how I see myself in that encounter, is I’m a patient, you know, but you are much more than a patient, you are a whole human being. But is there, I always like to ask to finish my initial sentence, I like to ask if there’s any advice that you kind of are inspired to give to anyone who’s newly-diagnosed listening today? It’s the hard ones, very open-ended question, right?
Amy 52:25
Yeah, I don’t know. I don’t know if I have much advice to give other than, like, in the beginning, it might seem like horrible and bleak, and it’s painful, especially if you don’t have your meds figured out, you’re not getting some relief through medication and struggling to find good, you know, care providers, all that. Just as painful as existence is, just like, keep going, you know, even if you’re sleeping through the whole day, whatever you need to do to get through the day, just keep going. Because, you know, eventually, like, hopefully, likely, you will find something that can get you feeling more like your old self again. So, just to keep going and to not be afraid to ask people to help you, you know.
Cheryl 53:12
That’s been, yeah, I totally get it or understand what you’re saying. And I think that I have to keep relearning that, you know. I’ve had this for 19 years. And I still struggle to ask for help sometimes. And I think it’s just, it’s hard because asking for help, it means admitting that you can’t do something yourself that most likely you in your past, you know, pre-diagnosis life maybe would have been able to do or just in your ideal world, you would have been able to do so. I think that’s really, really great advice. Is there anything else, just as a final note you’d like to share that we didn’t already cover?
Amy 53:46
No, I think I’m all set. Thanks.
Cheryl 53:50
Oh, good. I won’t say anything else because, like, when I’m being interviewed at the end, I was like, “Oh, I wanted to say this,” you know.
Amy
I’m sure I’ll think of something.
Cheryl
No, you will. It’s like that like five minutes later, you’ll be like, oh! No, but we covered, I mean, we covered so much, you know. We talked about your being diagnosed during the pandemic, we talked about making a career shift, how it affects you, you know, being a highly competitive, demanding career, and then your daily tips, and Rheum to THRIVE, and shame. And I mean, that’s really covered everything, so thank you so much. And do you want to share any social media handles for people to maybe if they want to follow you or is that more private. Sorry, I shouldn’t have mentioned it.
Amy 54:30
No, I’m always welcome for followers, but I warned you already, I’m very bad at Instagram. It’s very boring Instagram feed, but it’s @AmyMBowers, M for Michelle. Find me on Instagram and I’d be happy to connect with you. But it’s boring. You’re warned.
Cheryl 54:50
It’s not a competition, everyone. Yeah. That’s great, thank you so, so much for sharing today. Really, really appreciate it.
Amy
Thank you.
[Ending music]
