Episode 3 of the Arthritis Life podcast is now live on all major podcast players, and on the link in my profile!
In this episode, Cheryl interviews Claire, a young nonprofit professional, mom, and world traveler.
They discuss the MANY ways rheumatoid arthritis affected Claire’s career choice, pregnancy and parenting experiences, mental health, friendships, and more. She also discusses her rocky journey towards a diagnosis.
Claire has some stellar advice for newly diagnosed patients and constructive feedback for providers. This interview was conducted more like a casual conversation, and so you’ll also hear lots of Cheryl’s tips and experiences as well! It was recorded in 2019.
Here’s the episode breakdown by minute:
- 01:35 – Claire diagnosis journey for rheumatoid arthritis: difficulty being believed by providers through her official diagnosis and her journey towards accepting it
- 10:30 Claire’s pregnancy and childbirth experience
- 14:20 – Claires postpartum experience with RA coming back
- 16:20 – How Claire parents a Toddler with Rheumatoid Arthritis
- 18:15 Claire’s advice for people with RA who want to have a child
- 20:20 – How to Manage Stress and Anxiety with chronic illness, including tips for finding a good fit with a provider
- 26:40: Claire’s advice for newly diagnosed patients
- 30:10: What Claire wishes doctors did better
- 31:26: Claire’s tips for a good patient-provider relationship and tips for advocating for yourself
- 35:36: The Difference between living with an invisible illness and living with a visible one when Claire had to wear a splint!
- 38:55: How RA affected Claire’s choice of work, and her employment
- 41:42: How RA affected Claire’s relationship with her husband
- 44:00 – Fatigue and RA
- 45:44 – How RA affects friendships and relationships in adulthood
External resources mentioned in this episode:
Book: Suzie Edward May “Arthritis Pregnancy and the Path to Parenthood”
Mother to Baby – website for evidence based information for MEDs
Beginner’s Guide to LIFE with Rheumatoid Arthritis: the 4 week online program Cheryl created to educate and support people with rheumatoid arthritis. Registration is open from now through July 31st for the August course
Full Transcript:
[00:00:00] Cheryl:
[Introductory music]
Hi there. I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program.
I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis.
You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Hi, everybody! Today, I am so excited to talk to Claire. She is going to tell us all about her experiences initially getting diagnosed with rheumatoid arthritis and a really major career change she made due to her diagnosis and her experiences with pregnancy, childbirth, postpartum, and parenting with rheumatoid arthritis. She’ll also talk about fertility, fatigue, and give us some really great insights for communication with providers and just living life with arthritis.
She keeps it real. Okay, let’s get started.
Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness. No topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
[00:03:13] Claire:
My name is Claire. I am 34-years-old and I was diagnosed with rheumatoid arthritis at 23. And how I came to my diagnosis was similar to, I think, the story of many, in that it was a journey. And one that a diagnosis was not arrived at quickly or easily. At the time when I was 23, I had just returned from six months living in Madagascar.
[00:03:47] Cheryl:
Oh, my God.
[00:03:48] Claire:
Yeah. So, that’s not something you hear every day. When I came back, I was having some gastrointestinal issues, went to see a doctor, not uncommon for living abroad. I was diagnosed with Giardia and given a strong course of antibiotics, which I dutifully took, and immediately following, I started to experience some swelling in my left knee that quickly grew quite significant. Nearly the size of a cantaloupe. My left knee became enormously large, hot, red, impossible to move. It was very shocking. And so, I don’t know if you’ve ever heard that adage about like, when you hear hoofbeats, think horses, not zebras. But when you just come back from Madagascar, people are thinking communicable, exotic disease. Rheumatoid arthritis does not run in my family, though all the women in my family have Hashimoto’s thyroiditis. So, my mother, my sister, my aunt, my grandmother.
[00:05:04] Cheryl:
And that’s also an autoimmune.
[00:05:06] Claire:
Which is also an autoimmune disease, correct. And, but no joint issues. And I was only being affected in that one joint initially. And so, I had joint fluid aspirated and cultured for every sort of strange exotic disease I could and surely must have because of where I had just been. Which of course all came back negative, then the swelling went away and it passed for a few months where I wasn’t pursuing it as anything because the acute situation had dissipated and there were no additional symptoms. But then, I started to experience some pain and stiffness in my hands.
And went to my GP, because again, I had no inkling that this was an autoimmune condition, and went several times, trying to repeat and describe what it was that I was feeling and did not have a good experience, did not feel like I was being listened to. It wasn’t until I think the third or fourth time that I had gone back to my GP, that she even touched my hands to examine them. At which point I broke down in tears because I was so grateful that she was actually taking my pain seriously because I no longer had a knee the size of the cantaloupe. It was no longer visible, but I was experiencing significant pain and stiffness. And at that point I was finally referred to a rheumatologist and had a very hard time being believed. That was the hardest part.
[00:06:56] Cheryl:
Being some the, I’m guessing, the primary care maybe doctor is the one. And did you ever go back to her and tell? That’s a passion of mine, I hope that part of what I can do at some point is start a campaign where we go back purely for education. Because if everyone’s not, if we’re all not telling the people that didn’t believe us what actually was true, they’re not learning either, right? Yeah, so but yeah, I don’t even have — it was like 15 years ago for me, so I don’t even know some of their names anymore. I’m like, block them out of my memory. But I was just curious, because I do think that they need to know, if they’re telling people that, “Oh, you’re just stressed,” or, “Oh, you need to relax.” And you actually did have a legitimate diagnosis.
[00:07:41] Claire:
Yeah, no, I would love that. I don’t know that I’d be able to filter out my —
[00:07:45] Cheryl:
Ooh, let’s film it!
[00:07:45] Claire:
Yeah. I don’t know that I’d be able to filter out my expletives. I’d have a few choice words. And so, I got in to see the rheumatologist. He took a cursory glance at my blood work, had me take off my shoes and socks, grabbed my feet. I screamed and hit the ceiling, basically, in pain. And he, that was it. And he said, “You have rheumatoid arthritis.” We’re gonna get you on blah, blah, blah. And, so began the formal journey.
[00:08:21] Cheryl:
And how long did it take, between when you arrived home from Madagascar and when you got the definitive diagnosis of RA? Do you remember?
[00:08:28] Claire:
Six months I think it was. Yeah. So, not too long from when I’ve heard from a lot of stories But it was because I had come home and hadn’t yet started back in school again, it was all I was doing. I had all the time in the world to get to the right diagnosis. And so, it felt like a lot longer because the quantity of doctor’s appointments in that short period of time.
[00:08:52] Cheryl:
Did you delay going back to school because of it?
[00:08:55] Claire:
A little bit. Yeah. There were other factors. I had just moved, again, across country, or across the continents and then across country. So, I was landing in a new city for other reasons. It wasn’t all just because of the medical difficulties I was experiencing, but certainly, yeah, it contributed. And so, I had all the time to deal with it. And it still wasn’t getting results. I will say I have a lot of feelings about the diagnosis process and how that all went, even getting to the end of the road where I had the formal diagnosis that I could carry with me. There was nothing shared with me at that time about really what that meant and how it was a chronic illness and that these medicines they were prescribing were going to be with me forever, or at least for the foreseeable future, and these are the things that are going to be different about your life. There was none of that.
So, I had to process and come to all of that realization on my own. And that was emotionally very difficult the aside from all the physical changes then that were coming from my symptoms, which then became bilateral and started to move through more of my joints. All of that coupled with the emotional journey of going through the processing of getting a chronic illness diagnosis which was a whole separate thing.
[00:10:28] Cheryl:
How long do you think it took you to understand that it was a chronic illness? I think it was between five and ten years that it actually hit me. I didn’t really get it at first. But would you say it took you a long, it sounded like it took a little while, maybe not five years.
[00:10:44] Claire:
Yeah. No, it took a long time and I’m still processing, for sure. Like, there are things that still come across your path that you realize that are different now because of your diagnosis. But some of it hit me pretty immediately because the life I had been leading prior to that, doing fieldwork in a remote rainforest of Madagascar was no longer in the cards. It had been my if not lifelong dream, a dream for many years, to after finishing my bachelor’s degree I wanted to go into the Peace Corps and work in international development and live abroad in these remote sites.
And I very quickly discovered because I went immediately, almost immediately to investigate, is rheumatoid arthritis is an exclusion, a condition that excludes you from service in the Peace Corps. Because, I mean, because of the health concerns about being immunocompromised, the necessity of having refrigerated medications in most cases, it’s understandable. But that was immediate and pretty intense having that sort of rug pulled out from underneath me.
[00:12:01] Cheryl:
You have a small daughter who’s 17-months-old, and what were your experiences having rheumatoid arthritis and family planning, pregnancy?
[00:12:12] Claire:
Yeah. Yeah. It was a really long journey that actually formally started with, and I’m going to do my little plug here, with this lovely book by Susie Edward May. She’s an Australian, so I don’t know if American audiences are going to even recognize this book, but it’s called Arthritis, Pregnancy, and the Path to Parenthood. And I ordered it directly from the author, gosh, like five years ago. So, well before we were ever really trying to conceive. And I could not get through a single chapter without bawling my eyes out because it spoke directly to so much of the emotional journey that the path to parenthood as someone with arthritis is and was, for me, with a lot of it just being a lot of fear and self-doubt about this is a genetic condition.
Am I even making a responsible choice by wanting to have a biological child? What is going to happen to my body during, what is going to happen to my body immediately after? Am I going to be able to physically parent my child? Like, these huge unknowns and what that does to your psyche as someone, who’s once, you know, you get pregnant, very hormonal.
[00:13:41] Cheryl:
Yes, and prednisone, gosh.
[00:13:43] Claire:
Yes! You’re pregnant.
[00:13:46] Cheryl:
Really emotional — this is the best day ever; this is the worst day ever.
[00:13:49] Claire:
Yeah. Yeah, so it was a very, intentional decision when we decided to try to conceive because of all these considerations that both my husband and I had been through these questions together about what will happen if this? What will happen if that? Pregnancy itself was blissful after I got through my first trimester where I was weaning off medications. That, that was awful. But once my immune system decided to cooperate, it was heaven on earth. Being pregnant was amazing. And from an emotional perspective, for me, as someone who had been combating my body for nearly a decade, to have that like faith in my own physical self restored that you know what? I am not, yeah, I am not broken. Look at me. I’m big and bringing us a human into the world, like, it was so empowering for me.
[00:14:56] Cheryl:
Even just getting pregnant. We got pregnant on the first try and I was like, what? Yeah, like my body doesn’t usually cooperate. Like, I was honestly, that was my first thought, was like that’s not right. That’s not right because this is going to be, have to be a struggle, like it has to be because everything else has been a struggle. Yeah, so just watching your body work is so powerful.
[00:15:17] Claire:
Yeah, but I took nothing for granted either because I was always waiting for the other shoe to drop. And so, I was very deliberate in laying out our birth plan as far as where I wanted to be physically and who would be with us. So, I found an amazing midwife and birth center located really nearby our home, a doula to work with us during labor who was aware of my physical limitations and could help me make specific modifications to different birthing positions that I might not be able to do physically. So, it was, and it went perfectly. And my symptoms didn’t return for at least, I think, it was four months after she was born, and they came back on slowly. So, that was good. I was ready for a hitting, being hit by a mad truck, but that never happened. It was a slow return of my symptoms and it’s been really great to work with my rheumatologist to continue to treat my RA while still achieving my goals for breastfeeding and planning future pregnancies.
[00:16:41] Cheryl:
Was that hard with medications? I’ve heard that there’s a lot of confusion around which medications you can be on while breastfeeding.
[00:16:48] Claire:
We were able to talk about Cimzia, which is what I’m on now and what the research shows relative to the size of the molecule, and how it might be passed through breast milk and digested. And we feel comfortable continuing. And we, I’ve shared this information, of course, with the pediatrician, and so everybody’s in on it, and everybody’s okay with it, agreeing that any risks, which there are none that we can point to, but are far outweighed by the benefits. The physical challenges now as she gets older are increasing, so we’re working on that a bit. But what’s great as she gets heavier and more wily, she also understands language more and can be counted on to cooperate a bit.
[00:17:46] Cheryl:
As I say, I remember 18-months being about the peak of the difficulty for me in terms of that like they don’t quite have any self-control yet, and the language is still emerging. So, but by 24-months, you know, they oftentimes can follow directions a little better, maybe I’m being optimistic, but yeah. Not always.
[00:18:05] Claire:
There’s definitely not an always with a toddler, but yeah, so we’re right in that transition where she is too big for me to physically force her to do anything. She’s stronger than me in a lot of ways, but she understands, I think, to some extent that she needs to help me with certain things. Like, I mean, of course not like deeply understanding that she, for example, when changing her diaper now, she understands the routine that she’s going to come lay down in front of me on the floor. Like, I don’t even ask her. If she sees me sit down with the diaper, she shuffles over and lays down.
[00:18:47] Cheryl:
So, do you ever struggle with fears about the future, as she’s getting bigger? Or are you more like living in the moment? ‘Cause that was one of my hard things. I’d be like, what am I going to do when this happens? And what am I going to do?
[00:18:59] Claire:
Yeah, those are the thoughts that come when you’re lying in bed at night. And they definitely do. But I’m trying not to focus on them as much because every sign that I have right now is pointing towards those fears not coming to pass because she is such a dear soul right now.
[00:19:24] Cheryl:
She’s so sweet. No, she is amazing.
[00:19:27] Claire:
And so, she will be forever and she will never be a teenager, and she will be a blissful child her whole life.
[00:19:36] Cheryl:
Yeah. No, but my therapist helped me a lot with that because she helped show me that I have all this energy devoted to all these future worries, but in the reality, only one of those is even going to happen and it’s probably not even the one that I’m thinking about, so it’s a lot of wasted energy. Anything else you want to share with maybe audience members, all my audience members that don’t exist currently, but about advice to people who might be on the fence about whether or not to have a child or people who are pregnant who are like, oh, my gosh; people with rheumatoid arthritis who are pregnant who are like, what’s about to happen?
[00:20:12] Claire:
Yeah, I mean, I would love to say, it’s all gonna be fine, right? Because but you can’t, and I don’t think being Pollyanna about it helps anybody. But what I can say is whatever it is, you can get through it. And it rarely is as bad as you think it’s gonna be. And it’ll be, the things that are bad will be different than things that you thought. So, yeah, don’t spend time worrying about the future. Relish in the moment you have now. And yeah, don’t let fear guide your decision making. If you have medical reasons that you can’t pursue having a biological child, there’s all sorts of alternatives ways to have a family, or and not having a family is perfectly fine, too. I know a lot of people, there’s a societal or family pressure that a successful adult life looks one way. But it doesn’t. And just so many — that’s what I would say to people is, you know, make sure the decisions you’re making are for your happiness, not for your fear, and not for anybody else.
[00:21:24] Cheryl:
That is so great. And family, the word family, you know, used to look a certain way to me, you know. I always thought it would be I’d have two kids and I would have a certain, and now as my physical health has gone in directions I didn’t really foresee, like, I’m starting to think of family as different, like that being an aunt is really important to me, and being able to take care of, obviously, take care of the child I have is super important, and maybe having pets and things that I’ve had before. Again, it doesn’t, it’s not necessarily going to look the way that I originally planned it, but it can be, it could be just as good long-term. I wanted to ask a little bit about the mental health aspect for you of managing a chronic illness with your diagnosis story, we talked about how there’s different stages of acceptance. But have you experienced any mental health challenges like anxiety or depression as a result?
[00:22:27] Claire:
Yeah, absolutely. And I really appreciate you asking because, I think a big problem with people seeking help is the stigma associated with talking about mental health and it’s been a huge part of my RA journey is both the physical management of my symptoms as well as what I liken it to more for me personally is grief, is the process, processing similar to any other sort of loss. Because I had, at the time being diagnosed in my early twenties, I had a vision that I was dead set on executing and had been lining up all my necessary accomplishments to achieve said goal and then just had it, as I said before, the rug pulled out from under me.
[00:23:23] Cheryl:
Right, and your goal was to go to the Peace Corps.
[00:23:26] Claire:
Right. And lead this jet setting international global lifestyle that just is no longer feasible. One, I don’t have the energy; two, but just the physical limitations that I could not hike for two days into the forest or be away from a refrigerator. Or be — for your medications. Yes. And not for food, but also food. But yeah, also food. Always also food. But, yeah, also being immunocompromised in compromising situations. So, I logically know all the reasons why that this cannot be, but that still doesn’t make it sting any less. But what, where I’ve come to now, through significant professional health — that’s the important part, I think, to say. I did not do this on my own. I have an incredible therapist. I have been able to realize that how unhelpful it is for me to focus on what could have been that can no longer be.
But think about how, what were the real outcomes I was trying to achieve with that vision and how I could still get to that end game differently. And so, we talked about this earlier, but in my choice of career and focusing on nonprofit administration, I’m still saving the world from behind a desk and that’s okay. And can be more than okay, it can be amazing. Just look at, for here, we’re here in Seattle, look at Bill and Melinda Gates, right. They sat behind desks and changed the world. And that’s part of my process has been working through that. The grief still comes up. It’s not like it’s totally gone. It’s, I’m faced with at any time. My husband, for example, is incredibly energetic and physically active, which I’ve mentioned, and he will want to try a new sport, like, I guess I’m sitting in the car. I am an expert of ski lodge bunny, by the way. [Laughs]
[00:25:42] Cheryl:
Which is, for those of you in hotter climates, can you explain what that means?
[00:25:48] Claire:
A lodge bunny? My husband likes to downhill ski. I have tried. It’s really not great for my knees. It does involve a lot of bending of your knees and for an extended period of time. I can’t really do that. So, I just wear really cute parkas and sit in the ski lodge and knit. And drink hot chocolate.
[00:26:13] Cheryl:
Yeah, I know, that’s for me, too, my whole identity before, I was an athlete. And so, I was so hardcore, I ran, I lifted weights, I was so active. And yeah, I definitely get hit by those waves of grief when I see how other people doing the things that I imagined that I would do, but like you said, there’s ways to channel that same, to some degree, there’s ways to channel that same energy into other activities, but there also sometimes is benefit to just saying, you know what, that’s not in the cards for me and focusing on accepting that versus continuing to chase after that, for me, at least. But you mentioned you have professional help. Did you have a hard time finding someone or how did you find —?
[00:27:06] Claire:
She was the second person I went to. So, I definitely wasn’t a one and done shot. I, the first therapist I found locally, I wanted to leave halfway through and honestly, I should have.
[00:27:19] Cheryl:
I think on average they say to, I’m like, I was planning on seeing three to figure out which one and then the first one I got super lucky, she’s just the best. I’m like, you’re never allowed to move and if you do, I’m going to use teletherapy so you can still see me.
[00:27:33] Claire:
Yeah, yeah, and the Internet is a beautiful thing. There are patient reviews. And even, I found actually, ’cause there’s a self -selection bias for the folks who reply to reviews, of course, so you’re gonna get a lot of —
[00:27:52] Cheryl:
The bimodal, like, the best and worst. Yeah
[00:27:55] Claire:
So, you take all that with a grain of salt. So, I like to look at just what the provider is saying about themselves, you can learn a lot about them and the way that they speak about the care that they provide to, yeah, increase your chances of finding a better fit rather than just like throwing a dart at a board and to pick who you’re gonna see. I, yeah, I got pretty lucky finding someone pretty quickly and it’s really great. She’s fantastic.
[00:28:22] Cheryl:
What advice do you have for people who might be newly diagnosed with rheumatoid arthritis? People who are like, what do I do? What does this mean?
[00:28:32] Claire:
Yeah. I think, what do I do? What does it mean? Those are exactly the right questions, actually. I would say, yeah, keep asking questions. Take an active role in your care. Don’t be afraid to get second opinions. Don’t be afraid to ask for more information from your provider. And yeah, and don’t be afraid to push back. Wait, what do you mean when you say things are going to look different? That’s a generality. What will look different?
[00:29:03] Cheryl:
I feel like, I wish I could go back in time and listen to when my provider told me about my diagnosis. I feel like I had been suffering for a couple years before I got my diagnosis and I knew something was wrong and I had been told by multiple specialists, “You’re just anxious. You’re just anxious. You’re Type A. You need to relax. You need to stop,” and I was like, literally the only thing I’m taking about right now is that I want to someone to help me figure out my body like what’s wrong with it. And so, I felt such intense validation when she gave me my diagnosis. I felt anything else she said was like blah, blah, blah. What I got from the conversation was you were right, you have a specific diagnosis, and I wanted to know is there something you can do about it, right. And yes, there’s medication for it. I’m like anything else? She said I was, like, I was right. And I have hope now right because my symptoms fall into a medical category that then I could have addressed.
But so, I think one of the hard things for providers is if you’re newly diagnosed, you may be so desperate for like immediate relief that you’re not even potentially receptive to this more larger set of patient education that really has to happen at some point though. It’s like, okay, you may, right now, all you care about is getting your pain from a 9 to a 6, but you need to be educated on the fact that this is going to affect your family planning, this is going to affect your estate planning in terms of like long-term care when you become elderly. It seems like forever in the future now if you’re a young person with RA, but these are all things you need to think about. Anyway, long story short, that’s something that I try to figure out. When’s the right time to disseminate all the information a new patient needs, right? Maybe not in the first appointment, but you also can’t wait forever, right, so.
[00:30:53] Claire:
And what do I wish that, medical providers were aware of? I understand that women of childbearing age and interest may be in a minority of their patients, but our needs are complex and the science is changing regularly. And I wish that they had the interest and the capacity. I’m sure they’re all overworked. I know about the shortage of rheumatologists in this country, but I wish that they had the capacity to keep abreast of these changes in the science because being on nothing except my Plaquenil and my prednisone while in the initial stages of my pregnancy were extremely difficult. I could not walk up and down stairs. When normally I was having, you know, it was bad.
I wouldn’t have even been on prednisone if it weren’t for the fact that I had reached out to the experts at Mother2Baby for the latest research on the effects of prednisone early in pregnancy and during pregnancy because, there had been, like, preliminary results of earlier studies had shown an increased risk of cleft palate for prednisone use in the first trimester. But more recent research had disproven that. And my rheumatologist wasn’t aware of that. What I’m very happy about, though, is that she was open to it. And that Mother2Baby providing me the actual peer reviewed research that I could pass off to her. Not just, “I read on the Internet that it’s okay,” but here are the peer reviewed articles that show that it is safe.
[00:32:44] Cheryl:
What are some, in general, tips you might have for developing a good relationship with your providers? It sounds like having that open communication, having them trust you that you can bring articles to them, that you’re not just going to bring some random thing from the Internet, but it’s actually peer reviewed. That’s probably helpful for your relationship, I’m guessing. But are there any other tips for other patients?
[00:33:07] Claire:
I learned through my initial experience with my primary care provider through my first rheumatologist that the importance of someone who is really hearing you is second to none. That is the most important thing, that when you have a symptom or you have a concern that you can express it freely and know that the person on the other side is being completely receptive to what you’re saying. They might not agree with whatever suggestion you might have, but that they’re actually taking in that information. And that seems like a basic thing, right? But it is not.
[00:33:44] Cheryl:
No, I totally agree with you.
[00:33:48] Claire:
I wasn’t comfortable advocating for myself, you better be sure I was bringing someone with me to my appointments who could advocate for me, or to at least just provide that emotional support for me to feel more comfortable advocating for myself. Because a hang up I had when I was first diagnosed is I felt responsible for what was happening to me.
[00:34:12] Cheryl:
Yes. That might be a woman thing that we’re conditioned, maybe. I’m sorry. I started, I had a New Year’s resolution, like, 2018, to just stop apologizing for my physical condition because especially to doctors when that’s literally why they’re there to help, to help you. I’m sorry I’m here presenting these symptoms for you to do your job, which is to help me.
[00:34:35] Claire:
Yes. And if my labs looked bad, I felt like I had failed a test or something. So, as soon as I got over that which was not easy, things became a lot better for me. It was about partnering with your doctor to attack this external thing that may be internally to your body, but not like internal to your being. As I matured as a patient, for lack of a better term, and in advocating for myself, I also became unapologetic about asking for second opinions and for additional expert resources, and that is one of my biggest regrets that I didn’t do that sooner.
My, the inflammation in my wrists, in particular my right wrist, was really getting out of control and I wasn’t yet aware of the other medical resources that might have been available to me in terms of like hand specialists and managing that pain with proper splinting. What I didn’t realize is that because, and I do hold my Doctor’s a bit accountable for this, is I didn’t realize that with all this chronic inflammation the joint was getting damaged. When I finally went and saw a hand specialist, my joint was pretty much toast. I had no idea part of the reason why I was in so much pain was because literally there was no cartilage left and that it was all just like bone on bone at that point.
[00:36:11] Cheryl:
You had never had an X-ray?
[00:36:13] Claire:
I had, but it just had been the inflammation had been so great for so long. I had a cortisone injection in the wrist. Not that long prior, but it just degraded pretty darn quickly and was undergoing an autofusion. So, what that means is it was fusing itself. I didn’t have to have surgery but I did have to wear this for this custom splint for seven months to hold it and sleep in it to hold — it’s a little dusty because I haven’t been wearing it anymore — while the joint completed its complete autofusion. but I will tell you as somebody who otherwise has an invisible illness, wearing this puppy, totally changed my life. experience in the world as someone with a chronic illness because it no longer became invisible. It became visible and the general public when they see a woman in her early 30s walking around with this big thing In the Pacific Northwest, “Oh, did you hurt yourself skiing?” Oh, did you do any number of things.
[00:37:35] Cheryl:
Just fun things that you probably can’t do?
[00:37:37] Claire:
Yes, and complete strangers would come up and talk to me and I’d be like, hello, a grocery store clerk, let me tell you what made my work life very awkward for 7 months.
[00:37:53] Cheryl:
In a way, I feel more, I feel really awkward when I have to prep someone to shake my hand when I don’t have a visible sign. I’ll just say, “Gentle shake please,” but when you have a visible sign, for me, it’s at least been like, okay, I know they’re not going to crush my hand because they see it, hopefully. But I can see how it reduces the pressure, maybe the fear would be that you’re seen by them as less capable, potentially, or like invalid or something like, oh, this person who has, who is wearing this brace, what’s going on with her? Is that what you were thinking?
[00:38:25] Claire:
Yeah, it’s just every interaction with a new donor, a new sponsor, a new volunteer, became instantly about me and my illness from the moment of meeting them. It was without fail, every single person. No one ever ignored the brace saw me and it just engaged as if nothing had happened. And so, it was, it became so tiresome when the first emotion that anyone ever experiences or shares with you is pity. I hated it. So, it’s, “Hi. Nice to meet you. Oh, what happened?” Oh, it’s nothing It’s chronic as well. Usually was my, yeah, trying to move past it. And, “Oh, like carpal tunnel?” No, not like carpal tunnel. It’s rheumatoid arthritis. “Oh, you’re so young.” Yeah. Ugh. Yes. That was exhausting.
[00:39:22] Cheryl:
Yeah. And you’re trying, especially because this isn’t just a social interaction, this is you’re trying to do a job. Like, your job is to turn their mind on to focusing on the wonderful work you’re doing and getting them to donate rather than focusing on your health condition. So, that’s rough. Your original desire was to go into the Peace Corps and do really adventurous work, so how did you funnel that interest after you got your diagnosis into the current work that you’re doing?
[00:39:54] Claire:
Yeah, I think I made a lemonade out of lemons pretty well with that, in that I ended up going to grad school for a master’s in non-profit management. So, I could work on the administrative side in support of the myriad causes I care about. So, international development, wildlife conservation, healthcare policy, anything. I have now a chameleon set of skills that I can move through any of those fields, which I do enjoy a lot. And so, I, having an administrative job, I have not had to miss any work related to my RA.
[00:40:40] Cheryl:
When you were looking for jobs, did you have any, did your rheumatoid arthritis affect it? The kind of things you looked for in a job, or your interviews, or did you have any issues like disclosing, thinking about do I disclose that I have RA or not?
[00:40:56] Claire:
Yeah, I’m really glad you brought that up because it’s a sort of passion pet peeve of mine related to job descriptions specifically regarding ‘Must be able to lift X number of pounds’ in administrative jobs. I can tell you that was on my current job description. And I can also tell you, I’ve never had to lift X number of pounds. It’s almost never core to administrative work. Yes, you might have to pick up a banker’s box full of files once a year, and there’s always someone who can help you. And so, I just, I find those descriptions, or those particular bullet points in job descriptions, to be incredibly off putting.
And especially when the poundage has been inexplicably low or high, relative to everything else you’re reading in the job description. It has put me off of applying to jobs in the past because, I feel like beholden to disclose. I can’t do that because of X, Y, Z, which I don’t think is reasonable to expect me to have to disclose because I’d prefer not to until the point that I would need some sort of accommodation. And so, I really just wish that could be stricken from whatever form letters HR departments around the world are using, because I really hate it.
[00:42:25] Cheryl:
No, that totally makes sense. When you have had to talk about accommodations, do you have any tips to the audience about how to make, or approach that conversation? Or is it just totally dependent on each person’s unique situation?
[00:42:42] Claire:
I’m sure, I’m sure it is. And my individual personality tends towards diffusing awkward or tense conversations with humor. And that works for me in my casual workplace, but it might not work for someone else. So, if you’re at a big company, I can imagine you might have to go to HR and make some sort of formal request for special accommodations, whereas I can give one of my co-workers a shrug and be like, “I’m not lifting that.” And it’s totally fine because the vast majority of the world is oriented toward being helpful. So, my husband and I were roommates before we were boyfriend-girlfriend, and then, husband and wife. And he was my roommate when I was getting diagnosed.
[00:43:34] Cheryl:
Wow, okay, that is rare.
[00:43:36] Claire:
He met, right, he and I met right when I got back from Madagascar. So, he has been with me through the entire journey in one way or another. And so, he has a unique perspective on that. I am grateful that he didn’t know me prior, because I am different because if you did know me prior, I’d be gallivanting around the globe and have had a very different lifestyle than I have now. That’s been a blessing. It’s also helped him in understanding exactly what I’m going through because he’s seen the whole process. A lot of it is just the daily logistics of my physical limitations. But we found our, you know, after now it’s been how long? 10, 11 years, 11 years together. We’ve worked into sort of a flow of our division of labor of the types of activities that I do for keeping house and the types of things that he does. He digs in the dirt and I dust, you know?
[00:44:56] Cheryl:
Yeah. Logically divide the labor based on what you’re physically able to do.
[00:45:01] Claire:
Yeah. No, he has a strong caregiver instinct, to be sure. And boundless energy. Oh, it’s helpful. It is extremely helpful. So, yes, he’s doing probably a lot more than his fair share of the work, but he has more than his fair share of the energy. So, yeah.
[00:45:20] Cheryl:
I did want to ask about fatigue because there’s not always a lot of awareness about fatigue. And some of the research I’ve read is that fatigue is the second most important symptom to most patients with rheumatoid arthritis after pain yet, I have an amazing rheumatologist I’m like obsessed with but we hardly ever talk about it because I actually didn’t even know for a long time that it was related. I thought I was just tired just from maybe the medication. But have you, do you feel that fatigue is that you have fatigue related to your RA or —?
[00:45:50] Claire:
Yeah, absolutely. And but what’s so weird about fatigue is how intangible it is compared to pain. Sorry. Yeah, pain. So, in your face, right? I hadn’t been very aware of how fatigued I was until I went into remission during my pregnancy.
[00:46:13] Cheryl:
100% similar. Yeah.
[00:46:14] Claire:
And yeah, I was like bouncing off the walls, skipping through fields, la dee da, being pregnant is the best! And all the other moms in my mom groups are looking at me like, what is wrong with you?
[00:46:26] Cheryl:
Yeah, they’re like, pregnancy is so hard, and you’re like, what? I feel amazing.
[00:46:30] Claire:
Yeah, it’s the best I’ve felt in the last 11 years was when I was pregnant. You don’t realize what a weight the fatigue is until it’s gone because it really is so all consuming. It just resets your baseline. It moves what normal is. And for me anyway, there is no break from that. It’s on or it’s off.
[00:46:57] Cheryl:
It’s not just like you go to sleep and then you feel better. It’s not like tiredness. Yeah. It’s much more, it’s global. It’s like you’re — I almost feel for me like fatigue feels like the cells in my body are just having to work harder to just do the most basic stuff. What about, if you were comfortable sharing, like family relationships with your own family, talking about your diagnosis or friendships? Has that ever been, has there been any, highlights or lowlights from that?
[00:47:26] Claire:
Yeah, I would say the friendships. I’m grateful for the support of my best friend. I’m still best friends with my high school best friend from the Midwest. And so, we still keep in close contact and she’s been incredibly supportive the whole time. As far as other adult friendships, that is something that is, it’s hard for all adults, right? We’re all hyperscheduled. We have all these competing responsibilities of work and family and home. And it’s hard to maintain friendships, period. But as someone who has to go to bed at 8:30, 9 o’clock at night.
[00:48:08] Cheryl:
We’re on the same sketch. We should hang out more. Wanna hang out at 7:30 tomorrow?
[00:48:12] Claire:
Yeah! It is, it’s hard, especially with where the bulk of my current friendships have come from work and grad school. I’m not going out for cocktails. And so, that is a bit hard. And I struggle still to communicate with my adult friends about how they can, how we can still have meaningful friendships if I can’t do the activities they’re otherwise inclined to do. It’s hard to ask for, can we do this instead? I’m still working on that. That’s definitely an uphill battle for me, just personally.
[00:48:57] Cheryl:
Thank you so much for listening to today’s episode. Don’t forget to check out my latest courses and resources on myarthritislife.net. This podcast is brought to you by The Beginner’s Guide to Life with Rheumatoid Arthritis, a four-week online education and support program that I created from scratch to help people with inflammatory arthritis learn everything they need to know to navigate the social, emotional, physical, and logistical challenges of rheumatoid arthritis and related diseases. The next group is gonna start in August 2020. Learn more at myarthritislife.net or bit.ly/arthritiscourse, all in lowercase. You can also connect with me on my social media accounts, on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.
[Ending note]Thank you so much for listening to another episode of the Arthritis Life Podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the prerecorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone you know who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.
