Podcast Episode 1: Sarah Dillingham’s Rheumatoid Arthritis Story

Summary:

Sarah Dillingham shares her unique experiences living and working with rheumatoid arthritis in England and the USA. She and Cheryl discuss their best advice for newly diagnosed patients, explore how fatigue can be more debilitating than pain, highlight the importance of mental health treatment for chronic conditions, and dig into the impact of rheumatoid disease on everyday life. 

Sarah’s experience designing her own custom wedding day splint (due to not wanting to wear the typical ugly splints available in the current market) led her to form a start-up called Grace and Able, where she’s developing more comfortable and aesthetically pleasing wrist braces. She also runs the Women with Rheumatoid Disease Facebook community. 

Episode at a glance:

• 01:25 – Sarah’s diagnosis story and brief medical history
• 08:30 – Highlights and lowlights from Sarah’s experience with medical providers
• 23:34 – Sarah’s advice for newly diagnosed patients (includes a discussion on social media)
• 38:00 – How rheumatoid disease has affected Sarah’s experiences at work
• 42:27 – The effects rheumatoid disease has had on Sarah’s friendships and romantic relationships
• 47:11 – The origin of Sarah’s custom wedding day splint, which led her to form Grace & Able.
• 51:00 – How chronic illness has affected Sarah and Cheryl’s mental health.
• 59:54 – Why fatigue is the hardest part of coping with RA (even more so than pain).
• 1:07:20 – What to do when there are no more treatment options – how to have this discussion with your doctor and care team.
• 1:11:41 – Sarah’s frustrations with day to day living, and how she’s learned much of what she’s needed to cope with pain and daily living challenges from other patients and not health professionals.
• 1:18:00 – The three MOST important parts of Sarah’s current management of her condition.

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, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Episode links:

• Speaker links
  • Grace and Able – pain support products (company Sarah founded)
  • Sarah’s LinkedIn page
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Transcript:

[Introduction music]

Cheryl:  00:00

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. I am so excited to bring you the first full episode of the Arthritis Life podcast. Today. I’m talking to Sarah Dillingham, who’s had rheumatoid arthritis for many years. We’re going to cover so much ground. We’re also going to cover a really fun story about how she made her own custom wedding day splint. The one thing I want to tell you really quickly is that this was recorded back in November of 2019, so there’s no mention of the current pandemic, because it was a little bit before then. All right, let’s go. 

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. 

I’m so excited to be with Sarah Dillingham today. She’s going to share a little bit about herself and her diagnosis story.

Sarah:  03:14

Yeah. So, I was diagnosed with rheumatoid around 18 years ago, I was 28, I’m 46 now. I had what I thought was a broken finger, and it didn’t get better over a few weeks, which is very odd. So, initially, I just ignored it, because I just thought, “Oh, I’ve broken my finger. It’ll sort itself out.” And then, eventually I went to my doctor, and I was incredibly fortunate, because my doctor took one look at it and said, “I think that’s rheumatoid arthritis,” which is extremely, extremely rare. And so, I was immediately referred to a rheumatologist. I still had to wait for that appointment, so it was about three months until I saw a rheumatologist, but it was very fortunate that I got that fast referral, because within that three months, I suddenly started developing a lot more symptoms. And then, when I saw my rheumatologist, I got blood tests which confirmed the diagnosis, and everything went from there. So, I count myself very lucky to get diagnosed within, yeah, diagnosed within three months, started treatment within six. 

Cheryl:  04:33

Wow. And then, you were living in London at the time?

Sarah:  04:35

Yes, that’s right, yeah. 

Cheryl:  04:36

You’re going through the British healthcare system. 

Sarah:  04:38

Yes. 

Cheryl:  04:38

As I understand, it’s a little different, yeah. But can you walk us through a little bit of the the journey, your journey with rheumatoid arthritis, maybe from the medical side of, like, you know, which kind of medications, your experience with medication?

Sarah:  04:53

Sure. So, yeah, so it’s been a roller coaster. The first medications are on were pretty common, sulfasalazine, and there was another one. I forgot, it might be Plaquenil, and then methotrexate, and I was on those for around eight years altogether. It started off, I was reasonably well controlled. But then, after a couple of years, it became really severe. My symptoms became really severe, to the point where I was in absolutely excruciating pain. I could barely walk. I was in a job that I was coming to the point, I mean, I don’t even know how I got in to work in the morning. I all I could do for about a year was going to work, come home again, go to bed, get up. I was sitting at my desk. I would have, like, heat pads on my hands, on my knees, on my feet, and it was a really bad situation. I remember going into a pharmacy in my work and just begging them to give me anything, like, what could you give me? And he’s just said, “I can sell you a TENS machine, because that’s about the only thing I can give you right now that isn’t, you know, Neurofen,” or, you know, ibuprofen or something like that. 

And so, it was a really tough situation, and my I felt my rheumatologist, at the time, was not super sympathetic to the situation I was in, and the because the only solution that was being offered was more and more and more methotrexate. And I did not tolerate methotrexate very well. It made me very nauseous. It, you know, it seems like a minor thing, but it was pretty stressful at the time. It, you know, caused my hair to break and fall out. And even though it’s, you know, in the scheme of things, it’s a cosmetic thing, I actually found that quite upsetting. And I found it really difficult, you know, because I was taking more and more of this drug with these horrible side effects, and yet my symptoms seem to keep getting worse. 

Cheryl:  07:07

And was this, I couldn’t do the math. Is this the early 2000s or the mid —? 

Sarah:  07:11

Yeah, it would have been sort of mid-2000s. 

Cheryl:  07:13

So, biologics had come out already. 

Sarah:  07:16

So, yeah, so the biologics were out, but they weren’t being routinely prescribed where I was at that point. And what happened, again, I had another stroke of good fortune. I was leaving my rheumatologist clinic, and I’d had such an awful appointment, and I came out, and I was very tearful, and a nurse saw me, and she came up to me and said, “What’s going on?” And I just said, listen, I’m don’t think I can take any more methotrexate. And she said, you know what, someone here is running a clinical trial for a new drug called Humira, you might be a candidate. And so, I managed to get funneled into that, and everything changed. I mean, it didn’t happen immediately, because I had to continue taking methotrexate to prove for a certain period that I’d failed the drugs.

Cheryl:  08:05

This is step therapy, for those who haven’t heard about that. 

Sarah:  08:08

Yeah, so I had to go through the step therapy process, which means you have to have a certain amount of time showing a certain level of symptoms. So, I had to kind of officially go through that, like have a particular start time and end time. But once I had done that, which was really horrible, I was put on Humira, and it was incredible. The only way I could describe it is that I almost felt like I was getting younger. I went from barely being able to walk to running around. I wouldn’t say I was in complete remission. You know, I still had some symptoms, but, you know, I went from like an 8, pain level 8 out of 10, down to like a 2 or 3, and which is probably the best it’s ever going to be for me. And I’m very okay with that. 

So, yeah, so it was amazing. Humira did great stuff for me for around 10 years, then it stopped working, as these biologic drugs can. I then had a year on — and, you know, during this time, I won’t go into all of everything else, in and out of using prednisone or steroid injections into joints, particularly my knees and feet, which have been the biggest problem for me. And lots and lots of joints, which is fun. And then, I got to the point where I tried Cimzia. Did not work. Didn’t work at all. Had a horrible year on Cimzia, where I got lots of, I got three Baker’s cysts on my knee, which was —

Cheryl:  09:29

I forgot what those are. 

Sarah:  09:42

Oh, it’s where, basically you have fluid in your knee, and it swells up your knee to a massive football size, and then it ruptures and goes down your leg and you have a big elephant leg. It’s really, really unpleasant. But I now, you know, a very good rheumatology team now, and when Cimzia, it was obvious Cimzia wasn’t working, they were able to work with me to find out the best possible solution. And now I’m taking infusion, and I get that done regularly, and that’s working brilliantly.

Cheryl:  10:18

So, can you tell me a little bit about some of the highlights and low lights about your interactions with different doctors and providers, and kind of what general things that really work, great things, great things your providers have done, and then maybe —

Sarah:  10:33

Not so great?

Cheryl:  10:34

Yeah, walk down memory lane, like, happy and also sad.

Sarah:  10:37

Okay, so, yeah. I’ll start with the positive. I have a great rheumatology team right now at Seattle Arthritis Clinic. And what I really, they’re absolutely great, and what I really appreciate about my rheumatologist and the nursing staff there is how open and transparent they are with me when we’re talking through my treatment options, also when they’re talking about my situation, test results. Everything we do, they are very straightforward. I never feel like I’m being pushed in the direction of anything. I’m always given enough information that I can make an informed choice, and that really builds up a lot of trust in the relationship. 

So, when Cimzia failed for me, and I was looking at what my options are, because I’d already failed two biologic drugs, and I don’t tolerate methotrexate well, you know, I had somewhat limited choice, so it was really important that the next choice I made was hopefully the right one. So, having someone that I trusted to be able to lay out the pros and cons for me for those different options was just enormously helpful. So, then, when I made my next medication choice, I really felt that I was doing it from a place where I had a solid understanding of what the risks were and what the potential positive benefits were, and that makes a big difference.

Cheryl:  12:15

So, if I were to paraphrase it sounds like you were able to like collaborate, almost like a collaborative decision. They informed you. But then, you were given a voice. It wasn’t just like, “You must do.”

Sarah:  12:26

Absolutely. It was very much like, you know, here are some options for you. This is what would be good for you. This is what might not be so good. Here are the risks. It’s your decision, you know, not, “Do this.” So, that was amazing. And it also, having that kind of relationship, it has a secondary benefit in that, you know, I don’t feel stressed out when I go to that clinic. I’m not worried. I’m not thinking I have to get in there and make sure they hear what I’m saying, or I’m not worried about I have to come out with this prescription. I know I can just be very honest and have that, you know, kind of respectful, grown up conversation about it.

Cheryl:  13:10

That’s awesome. Okay, so those are all the good, that’s how it should be ideally. And we know, like, out of respect for all the hard work doctors do, there are sometimes, you know, constraints on their time or but at the same time, it’s important, I think, to shed light on some of the low lights, so the bad experiences you’ve had, only so that other people, especially like maybe med students or prospective doctors can maybe reflect and learn from the mistakes of others. So, what are some of the bad things? 

Sarah:  13:39

I have had some, yeah, not so great experiences. And I won’t run through all of them, but I will give you —

Cheryl:  13:45

We don’t have that much time. 

Sarah:  13:46

No, I’m going to give one example of just someone delivering some information in a way that wasn’t helpful. And also, just generally, to say that, you know, most of my not so great experiences, I’ve really boiled down to a kind of condescending dynamic where it’s really almost like I’m being told stuff, as though, frankly, as though I’m an idiot and I couldn’t possibly understand it. And you should be doing this because, not even because, you should be doing this. And if you don’t, well, do you want to be sick? That, you know, that kind of thing. And I appreciate when people are time pressed, they’re perhaps always not great at communicating. But I’ve had some real shockers. But I’ll give you one that wasn’t too terrible, but it’s just a good example, which was years ago, when I was taking high doses of methotrexate, I was also taking high doses of prednisone. 

And one of the conversations I had with my rheumatologist was upping either or both of those things, and my rheumatologist was keen to up the methotrexate. I would have preferred to up the prednisone, and so we sort of were trying to figure that out. And I said, “Well, you know, I really would like prefer to, you know, I don’t do well on methotrexate. Can we increase the prednisone?” And my rheumatologist said, “Well, only if you want your bones to crumble,” in this really sarcastic way. And I, you know, I mean, that information is correct. You know, high dose of prednisone can cause or, you know, increased risk of osteoporosis. You don’t want osteoporosis, obviously. But, you know, there’s a way to deliver that you can say, “Well, the reason I prefer you not to is because there’s an increased risk of osteoporosis, and you’re already on 25,” and etc, etc, and I can say, okay, fine, yeah, that’s fair enough. 

And you can have a conversation about the pros and cons. What you don’t need is some scathing, sarcastic remark, because what that does is it just shuts down the conversation. So, I came out of that just feeling really discouraged, feeling really like I was stupid, to be honest, like, oh, okay, I’m an idiot. I don’t know what I’m talking about. And then, also feeling very unheard. Because the outcome of that was we increased my methotrexate, which is exactly what I didn’t want to do. And in that circumstance, I went away in my prescription and I did what I was told, but I seriously thought about just slinging it away, you know, oh, just like, well, I’ll just nod and smile in the appointment, and then I’ll go and do whatever I want to do.

Cheryl:  16:30

And then, you’d be written off by them as non-compliant, right? Your intentions are to do the best, make the best decision.

Sarah:  16:38

And of course I want to do the right thing. And, you know, and if someone, if she had sat and explained that to me, then I’d be totally open to hearing it. But it’s that kind of communication style. It’s just not constructive. 

Cheryl:  16:51

Yeah, and it’s kind of like in the US, at least, I’ve heard people refer to that as kind of old school, like, in the old school, way of being trained in medicine. It was like, you know, you’re the doctor, you’re God, like you tell everyone what to do, they just listen. Like, very paternalistic, very patronizing. And at the same time, it’s efficient, but it’s not okay to be that to, first of all, it’s not okay to not listen to your patients, obviously, yeah. Second of all, to to minimize their fears through, like, sarcasm.

Sarah:  17:22

No one likes being sarcasm on a medical appointment. I mean, that’s just a thing. 

Cheryl:  17:28

You’re like, together, joint, like, I’ve maybe, having some rheumatologists that are different, yeah. But having them take that tone with you is obviously very unhelpful. And hopefully, I think doctors nowadays are being trained to be a little bit more, you know, patient centered. But unfortunately, there’s still people out there.

Sarah:  17:47

Well, and I think, you know, you mentioned efficiency, I think it might short-term be efficient, because, you know what, you get someone, you know, you can keep that appointment succinct, but I don’t think it’s efficient for the long-term, if you’ve got a patient who’s wandered off, has completely lost trust in the relationship, because I’m assuming that a medical practitioner would want their patient to be honest, you know?

Cheryl:  18:13

It’s like vicious negative cycle, yeah.

Sarah:  18:15

Right. I mean, you know it might be you want your patient to be saying honest about you know, if they’re drinking or smoking or doing whatever, you don’t want them to think, well, I can’t, you know, I don’t feel comfortable with this person, and I’m just gonna say what I need to say to get out of here. 

Cheryl:  18:30

Oh, that’s, I’ve definitely had those situations, and that can even happen on the positive side, where, like, let’s say your doctor recommended something, and you have a great relationship with your doctor, you almost don’t want to tell them it’s not working, because you don’t want to feel bad. Like, oh, it’s fine, everything’s fine. So, it’s funny. I, at the rheumatology conference last weekend, I can’t remember the exact example, but talked a little bit about that. I think it was in the sleep, talking about studies about sleep and sleep techniques, and they were saying you have to be careful about if somebody tries something like, let’s say, put your Fitbit on or something to track your sleep that they don’t then feel this pressure to report that it’s going well.

Sarah:  19:12

Right, right. Because so they’re not skewing it either way. 

Cheryl:  19:15

Exactly. But back to the main point, yeah, it’s like, they’re your good experiences at the arthritis clinic, and then your bad experiences are like two sides of the same coin. It’s like the good one is what to do, and the bad one is not doing what the arthritis clinic first did.

Sarah:  19:32

And I think there’s like a third layer in there, which is just neutral, which is but, you know, it does have a an impact on all of us, patients and providers, which is just systemic things that are baked into the system. And I was thinking about this a lot the other day because, and I don’t know if this is the case here or if it’s changed, but I remember some years ago when I was having my really serious feet problems, having a joint count done on me and my rheumatologist marking down that my joint count hadn’t changed, and I could barely stand up. And I said, “But what about my feet and ankles?” And my rheumatologist said, “Oh, we don’t count those.” I was like, what? And she said, “Well, we don’t.” This might be different now. So, I put that caveat in, because this was about seven or eight years ago, and yeah, she just said, “Yeah, we don’t count feet.” And I said, but look at my feet. We don’t count feet. But yeah, apparently at that point in time, when they did their, you know, when they go around and press your joints, she wrote that feet weren’t included. So, it was this really Kafkaesque moment where they were recording that I’d had no change, and I had.

Cheryl:  20:50

There’s so much, yeah, like, that’s why my rheumatologist office, and I’ll look up and I’ll link to the name of what this is, but they have this very common questionnaire that you fill out every time, and the first one is like these very basic questions, like, can you walk a mile? Can you open the faucet? But the bottom, it used to just say, rate your pain today on a scale of 1 to 10, which I really have a hard time doing. And it’s not because I’m like, annoyed at it, although I happen to be. It’s because it’s very difficult to put a number to it, because there’s all different kinds of pain. There’s soreness, or stiffness. There’s acute pain. I might have a zero on sharp, stabbing pain, but a five on soreness and stiffness. So, what am I supposed to say, you know? 

But so, but they started, they put a new one in there, starting last year, and it was like, it’s my favorite one. It says, considering all the ways that illness and health can affect you, how would you rate your functioning on a scale of 1, like, because I might be like, my pain might be a 2, but my like, back when I had a whole bunch of comorbidities going on in terms like, dysautonomia and gastroparesis and like, I had had a concussion and I had all these other things, I was like at a, my functioning was like, at a 3 out of 10, but my pain was only at a like — you want your function to be like a 10. So, be like the pain was only like a 2, the pain isn’t the contributor to my lack of functioning. You know what I mean? So, it’s like, as an OT, we’re always taught to look at like, end of the day, like, how come the patient function? So, it’s like, okay, maybe the joint count sheet that you’re supposed to write down does not tell the whole story, you know? So.

Sarah:  22:20

Well, and that’s that, you know. I mean, obviously I’m no expert on how they capture metrics, but, you know, and I’m sure there are people looking at it and improving these things. I mean, I have noticed that now, you know, there’s a lot more questionnaires about, you know, mood and depression and anxiety.

Cheryl:  22:40

Fatigue was the new one that came out of patient studies. Like, hey, look. 

Sarah:  22:45

So, I think, yeah, getting better at that. And actually, just reminded me, there is a thing where I go into my rheumatologist now, where every time you go in, there’s a little picture of a person, and you circle the bits that hurt.

Cheryl:  22:56

Yeah. Yeah.

Sarah:  22:58

So, I think there’s, and I don’t know how this stuff’s organized. But I do think, you know, these things are getting better, but I suspect that there are still lurking things in the system, particularly capturing metrics where perhaps, you know, doctors are frustrated. I mean, coming back to that rheumatologist, she can see my feet were amiss. 

Cheryl:  23:18

Yeah, it’s really that, like, I noticed in occupational therapy, I used to work a lot with children on like the autism spectrum, which seems like a different area, but, yeah, it’s the same thing where the things that are easiest to measure are the least important. You know, I can measure, I can put a number to it, how many times a child does or doesn’t do a particular action that doesn’t really tell the story of, you know, why? Why are they doing that or not? You know what I mean? It’s like, well, why? Like, yeah, how many joints hurt, or how many are puffy or inflamed doesn’t tell the story of what is that joint doing in real life. Like, are you able to hold your toothbrush? Can you make a meal for yourself? Like, you know? 

But back to the systems level, I think it definitely is an example of where I think doctors can get frustrated by external constraints, like, obviously insurance. One that’s gotten me before is like, I’ve had people limit my options, saying, “Oh, well, insurance won’t cover that.” Wait a minute. Give me the choice. Tell me, tell me what that costs. Because I might like, one time it was like, and this is actually for my son, but it was like, he was nauseous, and they gave us an anti nausea med, and they’re like, okay, well, I forgot how the pharmacist was able to explain to me eventually, like, well, you can flavor it so the child likes it more, but that’s not covered by insurance. I’m like, well, I don’t care. Like, how much more is it? Like, five bucks, so, but that’s happened before with with my healthcare, where it’s like, people assume that you only want to do something that’s covered by insurance. And yeah, if it’s like an MRI, that’s going to cost $10,000, yeah, I probably will want my insurance to cover that. But give us an — don’t make the decision for the patient. 

Sarah:  24:52

I think you know, the reality of the medical systems, both in the UK and the US, is that they are so complex. And, you know, I don’t get too much into the stuff behind it, because you’ll be here for a long time, but they are so complex that they do, you know, there’s no way you can have something that complexity that doesn’t bring in some kind of blunt restrictions and frustrating stuff. 

Cheryl:  25:14

So, as a patient, or having a chronic illness over many years, you end up kind of becoming almost an expert in like, how to be a patient. So, do you have any kind of expert patient tips for other maybe newly diagnosed patients or people who are just wanting advice from others? 

Sarah:  25:29

Yeah, very much. I have several. So, first thing newly diagnosed people is that even though a diagnosis can be daunting and scary, you are really going to help yourself by getting lots of information. It can be daunting doing that, I totally put my head in the sand when it happened and tried to ignore it, but I found that when I actually faced up to it and read up as much as I could about my condition and found authoritative, useful information sources. I’m a big fan of the Arthritis Foundation website. They’ve got some really solid information on that. So, that’s the first thing is, you know, give yourself lots of information to help you understand, you know, as much as possible. And, I mean, there’s a lot of information, so, you know, you might want to stagger it because it can be a bit overwhelming. Yeah, but yeah. So, that’s the first thing. The second thing is, one of the things I learned to do through, you know, I had had many challenging experiences with, you know, medical appointments that haven’t worked as well as I wanted to is I actually almost, particularly, if I’m not sure I trust the medical provider, I almost treat them like a business meeting which is a bit probably over the top. 

Cheryl:  26:56

You are paying. 

Sarah:  26:59

But what I do is I go into it thinking, I make sure I’m early. I make sure, you know, I’m not going to be kicked out because I’m not on time. I make sure that I kind of know what I want to get out of it going in. So, it might be that I’m in there and I just want to have information. It might be that I’m want to change up my medication, or whatever it is. I’ve got a sense of what I think I need, or maybe I need a diagnosis, or maybe, so I kind of have a sense of what I want to get out of it. And then, I also try to obviously have a good relationship with that provider in that I, you know, I’m always polite and respectful, because I think it just should be anyway. But if I have questions that I want to ask, I do the trick that many people do, which is I will literally take them in on a list. If I am in the appointment and, you know, there’s stuff happening, I’ll make notes. I don’t mind. I’ll put bullet point notes, because sometimes when you’re, I found when I’ve been in appointments where I’ve had, you know, news which is very emotionally upsetting or difficult to hear. 

Actually, for me, having my little notebook is something I can kind of hold on to kind of steady myself. And also, the other thing is, when people tell me stuff that makes me upset, I immediately forget it. I come out and think, “Oh, I don’t know what happened there.” So, I’ve actually got some notes. Now, my current rheumatologist is great. They print out loads of information for me at the appointment, but that is, you know, not something that’s happened to me. That’s an exception for me. Usually that hasn’t happened. So, I make my little notebook. 

And then, the other thing, and this is a tip I got off someone else, and it’s happened, is if I’ve been in a situation where a medical professional says to me, “Well, you know,” say, hypothetically, “Well, from your symptoms, you know, we could run Test X, but we’re not going to run that because I don’t think we need to.” It’s because what I’ll say to them is, okay, so that’s fine if you don’t think we need to do something. But could you put in my notes now we have decided not to run Test X because, and I think because sometimes the things that don’t happen don’t get recorded. And what I found is, if I go to other practitioners, you know, people will say things like, “Well, why didn’t you have this done?” And I’ll say, I don’t know. And they’ll say, “Well, you should have had this done.” And then, you in this very unhelpful situation where, if you can say what I was advised not to have this done for and you will see in my notes, and they can go, “Oh, right.” And they can either then say, “Well, that makes sense,” or, “Oh, I disagree.”

Cheryl:  30:02

Because they don’t all agree. Yeah. 

Sarah:  30:03

No, exactly. And it keeps it very factual, and it also kind of covers me, because, you know, it’s like it was that medical professionals expert advice not to do that, not that I, you know, said, “Oh, I’m not going to do it,” or I didn’t turn up for the test, or that, you know, and I’ve had situations as well. Oh, and the last thing I do is, if there are additional tests that I need, like blood tests, which happen all the time, or X-rays or imaging or whatever, I go to them, you know, I try and get them done immediately, especially if they want those things where you get a piece of paper and you’re like, okay, you have to get your blood test done, and you’ve maybe been there for a couple of hours, and you think, I really just want to go home. I force, yeah, I force myself to go. And I also, and, you know, make a note in my diary of blood tests happened on this day. Now, the reason I do that is because I’ve had, you know, I’ve had various situations where test results have got lost or muddled up. 

I had a particularly significant one back in the UK, where a blood test of mine was lost. And without going into the very tedious detail of it, the knock on effect of that was a prescription wasn’t renewed, which meant that I didn’t get my medication, which meant the delivery company didn’t clear my medication to go out. And trying to unpack that with, you know, the hospital blaming the delivery company, blaming the pharmacy, blaming I mean, it took me, like a week of many angry phone calls, all the while not taking my Humira. It took me a week to unpack it and finally work out that this blood test had gone missing. And then, when I tried to address that, I was just told, “Oh, you didn’t turn up for it. You didn’t have it done.” And I was like, I definitely did have it done. Well, if you don’t have your blood test done, we can’t — so, of course, so you get this situation? Yeah, absolutely. 

Cheryl:  32:06

Well. And just to explain really quickly, the reason that things get delayed with these kind of medications that we are on for RA in particular, is that are so expensive that there’s all these little loopholes that have to be met before you can get it. It’s not like you just go to Walgreens and get it, like you could get, you know, a prescription for a blood pressure medication or something. Not to say they don’t, you do have to do blood work for that occasionally, I think, like every year. But these, they don’t like, even for mine, for infusion based, they don’t mix it till you physically show up for the appointment because it’s so expensive they don’t want to waste any so that that’s, that’s a pressure on you as a patient.

Sarah:  32:45

And all of that, it’s completely fine. And, you know, I’m, you know, totally okay with all that. But yeah, that experience made me realize that, you know, I had this really awful experience where, anyway, everyone was just blaming each other. They were too busy blaming each other to try and resolve the situation. And the one thing I didn’t have on my side was I actually did go to this blood test. And I know I can’t really prove anything by having something in my diary, but when you’re in the middle of trying to unpick stuff like that, being able to flip back in your diary or your online calendar and say, “Yeah, I definitely did go on this day, and I was there at this time.” And so, yeah, I feel really confident, take a selfie in the blood room.

Cheryl:  33:33

No, seriously, why not? Here’s a picture of me there. It’s timestamped.

Sarah:  33:37

Yeah. And then, the last so, you know, I know my approach sounds very belt and braces, and is quite rigorous, you know, but I —

Cheryl:  33:47

What’s belt and braces? 

Sarah:  33:48

Oh, right, yeah. So, it means when you wear, oh, you call them suspenders.

Cheryl:  33:54

Oh, yeah, very formal.

Sarah:  33:56

When, you know, it means when you’re doing too much to keep your trousers on, you wear suspenders and a belt. So, yeah, you’re being very thorough. You’re being very, very thorough.

Cheryl:  34:08

We’re educating people not just on arthritis, yeah, but on idioms. British English versus American. 

Sarah:  34:14

So, yes. So, I know my approach, you know, of like taking notes and going into questions and all of this good stuff, it might sound very overkill or over engineered, but for me, it works. And then, the last thing I a hundred percent encourage anyone, especially if you’re newly diagnosed, to do is to join an online patient community. 

Cheryl:  34:34

Yes. Some are more negatively focused than others, so.

Sarah:  34:39

Yeah, and I think you know different person, you know, personalities work with different groups, but there are many, many online communities. I run one, Arthritis Foundation run one. I mean, there’s loads so and lots of people in multiple communities. But the benefit of that is that if you do run into any challenging situations, you’ve got other people there who can, who’ve been there and done it, and can share their experience, who can support you. And sometimes you know you’re just having a rough day, and you want to vent and rant.

Cheryl:  35:14

Moaning Mondays, or —

Sarah:  35:17

Yeah. And you have a chance just to say, you know what, I’m having a rough time. Yeah, and there’s people who get it. 

Cheryl:  35:22

And also just, like, Just for Fun Fridays, or —

Sarah:  35:25

Yeah, Thankful Fridays.

Cheryl:  35:27

Sure, it’s really, it’s really powerful to connect to others. I think, yeah, the only caution I always tell people who ask me is that, you know, to be careful about obtaining direct, like, medical advice. But just in case, someone’s just watching this video and not others, because it can be, I’ve seen people very unfortunately, you know, get scared off of trying medicines that are very evidence-based effective, because they are thinking that, “Oh, I’m just going to try X,” you know, kind of natural remedy or something. But none of those ever work. But there you can have effects of like, over generalizing based on one patient’s experience, you know. But overall, I think, yeah, the good outweighs the bad on many of the groups. 

Sarah:  36:15

Yeah, well, but, you know, this is an important thing that we do see come up in groups. You know happens in my one as well, where, you know, one patient might have a particularly difficult experience on a drug, and they talk about it and, you know, sometimes they might be having a really challenging side effect. And you know, particularly if someone’s more at the start of their journey, they can, just, can be a bit overwhelmed by that, and say, okay, ah, you know, I’m feeling — and that’s okay, you know, if people, you know, it’s okay when people are able to talk about that, right? And the thing is that I think a lot of people who’ve been in the community for a long time, or who’ve been diagnosed for a long time, are often, usually quite good, to be fair, at saying, you know, what works for one person doesn’t work for another. You need to go and talk to your rheumatologist about that. So, one of the things that’s great is that I think the community is a little bit good at helping each other like that. But you’re right. It can be scary if someone’s telling you about something that’s or, like, I’ll be really a bit much, you know. 

Cheryl:  37:23

Yeah, like, I actually never knew people didn’t tolerate methotrexate very well because I didn’t look it up when I was first, when I first got diagnosed. I just did with my doctor saying, because I was so tired of feeling so bad for so long, I was like, and this was like, 2003 so it was before the Internet was really, like, a big resource, and there was no social media. There was maybe Friendster. And so, yeah, I had no idea till, like, a few years ago that I was like, why are they talking about the methotrexate hangover? Because I tolerated it pretty well. I’m really lucky and so, and I do get a little bit fatigued the next day, but it’s not so noticeable that would make me, you know, but that so many people do. So, you know, it’s, it’s that, yeah, it’s being able to kind of take a critical eye or to say, okay, like, I’m gonna, I’m gonna approach this like as if I’m just sitting in a waiting room with a bunch of patients, and, you know, not to take everyone’s word as, like, literal, but it’s like, okay, that’s, like you said, coaching each other to understand that this one person’s experience. 

But humans, we’re storytellers, right? So, I’m doing this whole podcast. We love hearing other people’s stories. You’re never gonna stop patients from wanting to talk. Because you only have 20-minutes to talk to your doctor. You’re like, talk about my disease for 20-minutes every month? That doesn’t make any sense. So, I think sometimes providers kind of have this scared outlook, again, almost against social media. And I’ve even seen ot community, oh yeah, there people are afraid. But because patients come to appointments sometimes and say, “Well, I read this, like in my social media group, I read that you can just cure arthritis by taking turmeric.” These things that are like again, they aren’t kind of necessarily understood in the greater context of, like, arthritis, you know, evidence-based care, so but again, we can’t throw the baby out with the bathwater. That’s an American saying, yeah, just say, you know, like, yeah, that’s unfortunate when that happens, but it could easily happen in real life too. It’s not just — social media, it’s just a medium. 

Sarah:  39:20

Yeah, absolutely. You know, you’re always going to get patients talking to each other, patients talk in waiting rooms, patients talk online. I mean, I think, on balance, I mean, I know that it is better for patients. I mean, I a hundred percent know is because I hear it all the time from people in groups.

Cheryl:  39:38

Overall, it’s a beneficial thing for patients, I think, is it’s just a matter of understanding that it is information. Everything is information and shouldn’t be taken as like gospel. You know, one patient’s experience — I am curious how your work life has been affected by your rheumatoid arthritis.

Sarah:  40:00

It’s definitely had a significant impact on my working life. Back in the UK, I used to work in a corporate job that was very much about being physically present in an office. And while I wasn’t doing a, excuse me, physical or heavy laboring type job, I was working very long hours and in a fairly high pressure environment. And when, you know, that’s not very forgiving, right, when you’ve got rheumatoid. And the thing that really impacted me was stress, you know, being in a competitive, stressful, high pressure environment. It’s not great with rheumatoid. So, one of the things that happened is that people started noticing that I was having these symptoms because I was limping and I was using a walking stick and things like that. 

And so, I made the decision to be very open about having rheumatoid and the way I handled that was every job I’ve done since I made that decision, I will email my closest immediate team and say, “Hi, I have this condition. This is what it means. It shouldn’t affect my job, if you see me limping around or whatever, this is what’s going on.” And I found that very helpful, because it cut down on lots of people coming up to me and saying, “Oh, what’s on with your foot,” or if I’m wearing wrist braces, “Oh, what have you done to your arm? What happened?” you know, and you know, that’s not their fault. They don’t know. So, of course, you’re going to do that, but, you know, it gets a bit much, constantly explaining it. And also, because I just wanted to, you know, make it clear. Now that’s a very personal decision to do that. And you know, I no longer work in that corporate world, and my health is part of the reason I’ve changed what I do, and I do different things now, things that allow me to work from home, which is the main reason I do them. Well, not the main reason, but a big contributing factor. 

But yeah, it’s a very, you know, personal decision about whether you tell colleagues, because for me, I found it just really helpful, and that the majority of people were really cool and understanding and really kind, you know, I had great reaction. I didn’t really have anyone try to, you know, undermine me professionally or question whether I could do the job because of because of that. However, in any environment, a working environment, particularly fast paced, competitive ones, there is a way to risk that there might be someone there who’s not your number one fan and can potentially use this, you know, to undermine you or against you in some way. So, it is a really, really, really important decision. And of course, if you do open up about health conditions and disability at work, there’s also the fear that, you know, if there’s a downsizing or something like that, you might be more of a candidate. So, you know, it’s a really tricky one for a lot of people, but I think it’s really important to get it out there and talk about it.

Cheryl:  43:24

Yeah, and helps raise awareness of it, and especially the invisible impact of it, so even if maybe they see it, oh, your hands are in a wrist brace, but the email that you sent helps them understand, oh, it’s actually not just about the hands. It’s like a larger, you know, chronic illness.

Sarah:  43:39

And also, because by doing that, it definitely encouraged people to ask me questions about it, which is great, because I can raise a bit of awareness, but, you know, it just breaks down any awkwardness about it. And yeah, I’d say my overwhelming experience was that, you know, people were really, really understanding. And I actually had a couple people be above and beyond supportive and nice, so.

Cheryl:  44:06

That’s a great success story. Yeah, a theme of like communication here, you know, communicating with providers, communicating with coworkers. And I’m also curious how rheumatoid arthritis has affected your relationships with, you know, family, friends, romantic relationships, whatever you want to talk about. 

Sarah:  44:25

Yeah. I mean, it definitely can have an impact. It definitely has an impact. I think it’s a really difficult one.

Cheryl:  44:36

So, whatever you want to touch on.

Sarah:  44:39

I’m thinking, well, where to start. So, I think again, starting with a positive, you know, I’ve had friends who’ve been very understanding and lovely and totally get it. And, you know, I think one of the things you can tell is, if you’ve, you know, if I’m having a, I mean, I’ve definitely had — and I’m thinking, I’m just thinking of some nice things friends have done for me, where I’ve been maybe stuck indoors and someone’s popped round and said, “Hey, I’ll hang out with you for a bit,” or whatever, or, oh, you know, or perhaps I’ve not been able to attend something, and they’ve been completely understanding about it and not made a big deal. 

But also, it can have a big impact, because you go, and I mean, I’m a very gregarious person. I’m very outgoing and social and chatty, and I used to go out all the time. And in fact, when I was 15, someone called my dad at home, called my house and said, “Where, is Sarah there?” And my dad said, “No, she went out when she was 15, and she hasn’t come back in again.” So, to go from that to suddenly your life turning upside down, and you can’t go out half the time or not, you know, actually, I had years where I could barely go out other than to go to work. And that can really impact your relationships. You know, because people invite you to stuff, they invite you stuff, and then they kind of stop inviting you to stuff. Or you think you’re going to come to something, and then at the last minute, you can’t make it, and it just creates a really awkward, unpleasant situation. So, that’s difficult.

I think, in romantic relationships as well, you know, dating with rheumatoid is difficult, because at what point do you tell someone that you’ve got rheumatoid? Obviously, we can present as, you know, hey, yeah, I’m completely healthy, you know. And particularly a good day, no one would know, or they would look at me. I imagine people looking at me now wouldn’t think, oh, you know. But I do have some days where I’m not so well. And you know, trying to communicate that is really difficult. I certainly think there are impacts of rheumatoid, you know, around things like, you know, fertility and long-term health. The potential of moving into disability, the potential of maybe having to stop work. You know, those are kind of worst case scenario things, but they do happen. So, if someone is talking about a very serious relationship with someone coming into it, or, you know, getting married, those are things that they really need to consider if they’re up for, you know, as possible scenarios. They might not necessarily happen, but they’re possible. 

So, you know, it can be quite a I mean, it’s a big commitment, you know. So, yeah, it definitely has had impacts. But overall, you know, I’ve been very lucky. And you know, the only thing is, obviously, as well, the one thing I would say is when someone gets diagnosed with it, that’s not just a shock for them, but it is also a shock for their friends and family. If you’ve got people close to you, you know, what —? In my case, you know it was shocking for family, too, and they have to adjust to it. And I certainly talk to people all the time who are frustrated that their friends and family maybe haven’t adjusted, or don’t understand, or don’t want to know, or do the classic, “Oh, yeah, I’ve got a swollen toe,” business, and maybe aren’t, and that can cause problems. And I’ve experienced that as well, where I’ve had people, you know, some friends, be a bit, “Oh, yeah, I’ve got that too,” you know, almost like, what are you moaning about? And that’s frustrating. 

Cheryl:  48:42

It sounds less serious than it is, yeah. Well, and I think at one point we were talking a while ago, and you mentioned to me something about your wedding day splint. Do you want to share that or —? Yeah, sorry, I didn’t ask you this beforehand, but.

Sarah:  49:01

Yes. Yeah, I can talk about that. So, on my wedding day —

Cheryl:  49:05

The Wedding Day Splint. It’s the new Hallmark movie idea. It’s copyrighted by me, though, yeah. The Wedding Splint.

Sarah:  49:11

They’ll be calling it The Christmas Wedding Splint. They’ll be doing it now, yeah. So, yes. So, what happened is I was planning my — I got married a few years ago, and we wanted to do a first dance that was had lots of twirling around in it, because I had a big, puffy dress on that went to twirl about in. And it was proving very difficult with my sore hands and my sore wrist. I’ve got some erosions in my, bone eroded in my wrists, and so I needed to wear a wrist brace on my wedding day, which is not a great — which is rubbish, you know? But I got together with a friend who helped me out, and what we did was we customized it. We put it in fabric similar to my dress. We put sparkly, blingy things on, you know, we adjusted it a bit so I could wear it and feel comfortable in it. And then, what’s come out of that is that I shared those photos online, and I spoke to loads of other people who are fed up with their wrist braces, either because they’re uncomfortable, hot, sweaty, or because they just don’t and/or they don’t like the way they look. So, from there, I’ve started a startup developing better orthopedic wrist braces for people with chronic pain. So, I’m working on that at the moment. 

Cheryl:  50:42

I will definitely be sharing more about that as it becomes into the market phase, when it comes out to where we can buy it.

Sarah:  50:51

Yeah, that might take it. It takes a little while to do these things, but yeah, so.

Cheryl:  50:55

I mean, it’s amazing that you as a patient and not as a medical provider, you saw, you know, a need that needs to be filled. And you went out and did it, or in the process of you are doing it.

Sarah:  51:06

Yeah, and it really was what, so two things have really made that happen. The first day was this overwhelming response from people saying, “Oh, these things are terrible. I never,” basically, I kept hearing people saying, “Oh, I never wear mine in public. I hate it.”

Cheryl:  51:22

A tool is only as good as people’s use of it, right, willingness to use it.

Sarah:  51:26

And so, they don’t wear them. And I didn’t wear mine as much as I should. And I, you know, it’s only because I had to wear it, you know, I really had to wear it. I couldn’t have done the dance. And then, the other thing is, I met a hand therapist over here called Trevor, who I work with. And so, you know, obviously.

Cheryl:  51:44

I went to high school with them. 

Sarah:  51:46

Yeah, which is really random. 

Cheryl:  51:48

Occupational therapist who’s a certified hand therapist, which is a specialty,

Sarah:  51:52

and yeah. And so, that was really cool, because obviously I can come from the patient perspective, but I need someone who knows their way around hands. So, yeah, meeting him has really helped us start to get this going. And I’m now working with the factory, and it does take a few months to source materials and get it going, but yeah, so hopefully we should have something in 2020.

Cheryl:  52:19

So, I’m curious about the way in which rheumatoid arthritis, or just chronic illness in general, has affected your mental health, and any struggles you’ve had that you’d be willing to share. 

Sarah:  52:33

Yes, so I think having a long-term chronic condition is very challenging emotionally. It’s a roller coaster emotionally to start with. You have good days, you have bad days. You have really, you know, difficult times. You know, dealing with pain on its own is exhausting. You have, you can have pain, insomnia, trouble sleeping, and I’d say overall, I wouldn’t have said I had any — so, for a long time, even though I had some really emotionally challenging times, I wouldn’t have said they tipped over into being mental health issues, until I was on prednisone. I still am, but I was taking prednisone, a steroid, for a really long time. And I started to get some really difficult symptoms around anxiety and sort of panic attack type feelings. And I never really experienced anything like that before, and I found it very debilitating and frightening. And it took me, it took a while to work, to work out the connection between that, and I’m pretty sure it was the combination of prednisone, the effect it has on my sleep, because it really messes with my sleep and kind of all of it together. 

And then, if you layer on top of that, that having a chronic illness, you know, it does impact all these things we’ve talked about, like, your working life, your relationships, you know, and your life just shifts and adjusting to that’s very difficult. So, you know, you feel — how am I going to keep up at work? How I’m going to keep my job? Oh, so and so seems a bit off with me, because I didn’t show up at that thing, you know, all that stuff. Layer that on. I did have some really difficult, that’s about a year where I was really struggling with anxiety. Now, once we figured out the role of prednisone in that, I was able to reduce, taper off the dosage, but I also got some help in terms of therapy around cognitive behavioral therapy, which really helped me in terms of managing it myself. And since then, I haven’t had, I didn’t have so much of a problem with it. But having gone back on prednisone about two years ago, it’s kind of piped up again. 

But what I found is that having had that therapy years ago, I’ve really got the tools to managing now. You know, I won’t say I don’t feel anxious or panicky. Of course, I have those times. But I’ve got, you know, I really feel like it’s changed from a situation where I just feel very anxious and panicky and I don’t know what’s going on, to I feel anxious and panicky and I know what’s happening and, okay, these are ways I can deal with it. And so, I can either use my cognitive behavioral therapy techniques. And I also, I don’t think I’m necessarily very good at it, but I also try to do meditation every morning.

Cheryl:  55:52

No, and it’s, yeah, not about being good at it, it’s just figuring — yeah. Yeah, I try. I’m not very good at it either.

Sarah:  56:00

But it does help. I find it very helpful. 

Cheryl:  56:02

Trying it is, as my psychiatrist says, it’s a practice, you have to practice it. It’s practice. And it doesn’t mean — it is not a thing that’s only beneficial if you’re perfect at it. And there is no perfect. So, yeah, and I was going to ask, how did you — I think a lot of times people get intimidated by the just the process of finding mental health help, like, if you’re open, with a counselor versus like a psychologist, or did you get a referral? Or how did you find how did you take that step? 

Sarah:  56:31

Well, I was initially referred to a psychiatrist in the UK, and he was great. He was really lovely. And initially we were looking at medication, which I wasn’t very keen on at the time, although it was nothing wrong with it. And we decided not really to go down that route. And the reason for that was because there was this realization, you know what? Actually, let’s just try lowering your prednisone first before we add in another medication.

Cheryl:  56:58

Actually, yeah, that’s because it’s, I mean, I struggle with anxiety, and I’ve shared that before, but I’ve only had to do prednisone for short courses, but each time it has, like, triggered my anxiety, but because, but knowing it’s coming, yeah, it makes a big doubt, because then you can say, this isn’t just — this is my prednisone making my brain think this, right? And for me also, it was coffee, like, if I do coffee and prednisone, are not a good option anyway. So, anxiety. 

Sarah:  57:26

Well, and, you know, the other thing is, I don’t drink alcohol at all now, but I did at the time. And one of the things I learned from this psychiatrist was if you add alcohol on top of all of that, you know, alcohol can impact depression and anxiety as well and exacerbate them. You know, it might feel great when you’re drinking it, but the next day, everyone’s had that hangover where you feel nervous about stuff. So, then, when he then referred me to a therapist who said, you know, I did this — how long was I seeing him for? Not a massively long time, like, couple of months, maybe. But just once a week, went in, and learnt all this stuff. And it was great, and I still do it now. So. 

Cheryl:  58:13

Well, you’re good, you’re a — I shouldn’t say, I actually tried to say that you’re a good patient. I was gonna say you’re a good patient, but I know it’s we don’t, we shouldn’t label people, you know, good patient or bad patient, but no one’s a good patient. I think, I mean, I hope that if you figure out — if you send this to your old counselor or therapist, because I think it’s amazing that you’re still able to use CBT. I mean, it’s, it’s giving you, it empowers you. In my experiences with therapy with CBT — I’m getting confused with CBD — and then, I’m also doing this therapy called ACT, which is Acceptance and Commitment — it stands for Acceptance and Commitment Therapy. It’s known as like, it’s a mindfulness-based thing, but it’s known as like the third wave in psychology and psychiatry. So, like, the second wave was CBT, and it works great for some people. Some people can just stop with that. My brain is special. So, I needed to try something, because I got to a point where I could do the CBT, cognitive behavior therapy exercises, but success, like, I could successfully fill out the worksheets and, you know, but it didn’t translate into a change my relationship to my anxiety across the certain areas until I tried the acceptance-based therapy, which so some people call it acceptance-based. 

So, it’s instead of running — so, to me, sometimes I was using CBT as a tool to try to run away from anxiety. And so, acceptance forces you to tolerate your anxiety. So, this is part of life. It’s like for pain as well, to say this is part of life. I’m experiencing it. I notice it. I notice I’m having thoughts about it, but it’s you sit with it. You do not try to, you don’t try to counteract your thoughts with, like, logic. Just, and it’s the most counterintuitive thing, because I’m very logical, and I’m like, no, I should just, like, explain to my brain all the ways in which these thoughts are wrong, right? But no, that didn’t work for me. So, this my psychiatrist, unfortunately, he does full hour-long therapy sessions, which is kind of psychiatry used to do that, but nowadays it’s more oftentimes people are having the shorter kind of medication-based visits, but mine does both medication management and full therapy sessions, and so that’s what’s ended up working, a blend. It’s not that I never use CBT strategies, but that I focus on, like, accepting. 

Let’s say I’m starting to panic instead, or running away from it. It’s like, I have to do a strategy to make my panic less, or to make my anxiety less. It’s like I just sit. I’m like, I’m noticing. I’m noticing this. So, it really is, it’s a mindfulness space that you just notice. You don’t, you don’t label it as good or bad. You’re like, yep, I’m feeling my heart beating, and I’m feeling that I’m noticing my anxiety, you know? And it’s taken a lot of practice. Like, at first, like, this is, this is dumb, because I’m like, I’m noticing that I feel bad. Where is this gonna go? Like, how’s this gonna help fix it? Yeah, exactly, exactly. Just really. So, anyway, they’re all helpful. So, I’m not saying that ACT is better than CBT. For me, it was like, that’s been for my more heightened anxiety, it’s ended up being kind of the missing puzzle piece that helped me really change my relationship to anxiety. So, sorry, I somehow turned this into —

Sarah:  1:01:22

No, I’m glad it’s working for you.

Cheryl:  1:01:25

Yay. But therapy is amazing. No shame in therapy. 

Sarah:  1:01:27

Definitely not. 

Cheryl:  1:01:28

I am curious your experiences with fatigue, which is something that a lot of people don’t know about as a side effect or a part of living with rheumatoid arthritis. How has that affected you?

Sarah:  1:01:43

So, for me, fatigue is the most challenging symptom of rheumatoid, I have definitely had times when the rheumatoid has been uncontrolled, where my pain levels have been really, really high. I don’t want to minimize that at all because, but the fatigue that goes with it can be really overwhelming. And the only way I can describe is it’s absolutely like being hit by a truck. It’s not, it’s more than being tired. It’s happening because your body’s in an inflammation state. And so, inflammation, yeah, so you’re, you know, you’ve got a lot of inflammation going on in your body, and there’s all sorts of — I won’t go to all of it. 

There’s all sorts of things going on around that. And that makes you feel absolutely exhausted. It’s a very similar feeling if you’ve ever come down with flu, as in, not just a bit of a cold, a proper flu, where you’re knocked out for a week, maybe a couple of weeks. It’s that similar feeling of when you just, you know, you stand up and you want to do things, and you think, oh, I really, really need to sit back down right now. So, having fatigue can really impact everything, you know, when it’s that level. And I’ve had times when it’s pretty full on, and other times where it’s less so, but it can be just like walking through a constant fog.

Cheryl:  1:03:16

Yeah, mental and physical. Yeah, that’s hard to disentangle those two. But, yeah, the mental fatigue. Sometimes we feel like, maybe I sometimes I have just one of the other, I don’t know is it the same for you, like, where I feel like, really mentally foggy, but I’m, like, physically kind of functional, like I can get up and move around. But then other times I’m mentally totally clear, and then, but my physical fatigue is, you know what I mean? 

Sarah:  1:03:40

I’ve definitely had those different kind of bouts. Yeah, and even when you know why it’s happening and what’s happening, it’s still very difficult to deal with on a day-to-day level. The ways I’ve dealt with them, I’ve dealt with it in a short-term way, which is, you know, doing things like having coffee or if I need to do something important, I’ll have an espresso. We’re strategic, but it’s not long-term. It’s definitely make this happen now. Long-term, the best way I have to deal with it is just looking after myself and making sure everything I can do to get a good night’s sleep, everything I can to eat healthy, all of that kind of stuff. Trying to exercise actually does help, even though it’s really difficult when you’re not feeling like it like that. I do find that really helps. I mean, the thing that works for me is swimming. 

But that can be tough. You’re not feeling very motivated when you’ve got fatigue, and of course, it makes work difficult, so I did used to find that very tricky. Yeah, I mean, the only way I found to successfully tackle fatigue is tackling my RA overall. So, the root cause. Yeah, I have not — I wish I had some amazing way that I could boost energy. And I mean, there are, you know, things that you can check into. It’s always good to make sure you get enough vitamin D. It’s always good to make sure, you know, you’ve got the right iron levels, all the sort of things that might undermine you having energy anyway. But if all those things are working, and it is just fatigue, it’s the most challenging thing, because there’s just so little, or there’s so little, I’ve found you can do to improve it.

Cheryl:  1:05:29

Yeah, one of the few things for me was learning about the relationship of, like, my internal circadian rhythms and what times of day — so I’m a morning person, and this is just something I’ve figured out on my own. But, you know, so there’s these charts you can see of like when the energy peaks of people who are like morning people’s circadian rhythm versus night people, like night owls. So, my husband’s like a night owl. And I could see, like, exactly on the graph where my energy starts dipping. So, I just, for me, it’s also the planning ahead of like, even if I’m not fatigued for my RA, I just get a dip in every afternoon, like, between 2pm, and 3pm, 4pm, so I try not to schedule anything important. So, knowing your — but, yeah, you’re right that there’s, like, that’s more of a compensating mechanism. You compensate for the difficulty, but you’re not necessarily able to remediate it.

Sarah:  1:06:21

Well, I mean, but that’s very sensible. I think, you know, definitely there’s something I do know every time I — rheumatologists or rheumatology clinics, the number of times people have advised that I pace myself. And it is, you know, many, many times — and I do think you’re right, though it is very sensible to know yourself. And I’m a morning person too, so I know if I need to get something done, I’ll get up and do it as the first thing.

Cheryl:  1:06:48

Oh, my nap is scheduled in the next 20 minutes. 

Sarah:  1:06:54

Well, and that’s the other thing, is kind of knowing all that stuff. But yeah, so pacing is key. I do think it’s a sensible thing to do. It’s also not always easy to do, because real life gets in the way. And, you know, sometimes things happen at a really not a great time. So, you know, like, just have to get on with it.

Cheryl:  1:07:18

Like, I used to work in a clinic setting, where in pediatric clinics, the most popular time of the day is after school, which is when my energy is the worst, yeah. Whereas when I worked in school-based pediatric therapy, the most busy time of day was morning through early after so I found that, yeah, again. But I have flexibility in my career. I have a lot of flexibility in choosing, right? But whereas some people their only options ever going to be 9-to-5 or, like my sister works nights. So, you know, whatever it is you might, you know, some careers where it’s easier to energy pace. I mean, you can’t necessarily tell everyone I’m only available for meetings at 9 o’clock. And if you can work for yourself, you can, but not everyone has that luxury. 

Sarah:  1:08:03

Oh, yeah, a hundred percent. And also, I think, you know, particularly people who are in jobs that involve being on your feet a lot, you know, things like nursing, hairdressing, things like that, you’re not gonna be able to say to, you know, patients or clients, “Oh, please don’t need me to come and do this thing. That time I’m having a bit of a dip.”

Cheryl:  1:08:21

Yeah, yeah, it’s really hard. Flexible, yeah, if you could have a flexible career path, like, where your work doesn’t depend on a certain hour of the day, that’s like, ideal. But again. 

Sarah:  1:08:30

Well, and, you know, that’s why, yeah, honestly, that’s actually why I changed careers because, you know, I can’t be in an office, like, just saying, “Hang on a minute. I need to lay down between four and five. I need to lay down,” and, you know, people are gonna be like, what? 

Cheryl:  1:08:51

You know, millennials, they like go on their hammocks.

Sarah:  1:08:55

Maybe, yeah, right. I need to work a big tech firm that’s got a nap pod. They didn’t have them when I was — I missed that. I was too old. 

Cheryl:  1:09:06

Oh, my gosh. The last thing I want to ask is about what, you know, you’ve had, you’ve lived with chronic illness for a long time, and I think when you’ve managed it for, you know, over 10 years, there’s sometimes there’s points where you get to where there aren’t any maybe sometimes more options. Or how do you handle those moments, those conversations with doctors?

Sarah:  1:09:30

So, this, I think, is a is a really important topic, because I think it’s something a lot of people shy away from, and I think it’s hard for doctors or medical practitioners, because, you know, we live in a, you know, often we think about illness as being, you know, I’m sick. I come to you. We have a solution. We find a — we give, you know, here’s a prescription, or here’s a do whatever, and it fixes you, and now you’re back to normal and you recover. That’s kind of what happens with a lot of illnesses that we’re all familiar with. Or, you know, you’re not fixed. That’s the other alternative. But there’s not a lot of room for you have a chronic condition that’s going to get gradually worse. And, you know, we have certain medication options, or, you know, lifestyle change options that you can do these things, and you may have periods of remission, and you may have periods where they stop working. And so, accepting that and being able to have those kinds of open, both on the medical practitioner side and the patient side, is really difficult. 

And definitely, you know, I’ve sat in conversations where I’m on my third biologic drug, and, yeah, you know, well, in that case, you know, you have this situation where, well, it’s on my third biologic drug. I’m so excited when Xeljanz came out, because I was like, oh, there’s an extra one before I run out. And so, it’s almost like you feel like you’re in this race of all these people are developing these things. So, I hope mine keep working until they come, you know. So, it feels very a bit scary, because, you know, I’m doing really well right now on the drug I’m on. But, you know, I know, if this stops working, what I’ve got left to do is not, you know, it’s not, it’s not a, you know, a really huge list of things. 

Cheryl:  1:11:37

Yeah. And you know, the reason that some of these, in case you don’t know that these, your immune system is attacking itself, which is part of rheumatoid arthritis, but then, and so you give it medication that alters the immune system, but then the immune system figures out workarounds. I’m not going to know this. So, some of the reasons that we expect, or as patients, you kind of expect that at some point some of these medications will wear off. Is because your own immune system kind of develops antibodies to the medications unfortunately. Not everyone, but it’s pretty typical to have them not last forever. 10 years is actually pretty long, your first one. 

Sarah:  1:12:13

Well, my first one was — 

Cheryl:  1:12:115

Mine was like seven years, but yeah, which is also pretty good. But anyway, sorry.

Sarah:  1:12:19

And here’s the thing, I’m very, you know, to be clear, I am, you know, at the probably the best point in history to be having this because these medications have absolutely revolutionized the outcomes for rheumatoid patients. So, I’m very grateful to have these things. But at the same time, having spoken to people who are older than me, or having seen the level of damage, that joint damage, and the level of pain levels that people have, you know, the thought of, you know, that these options are only coming in is frightening. Also, you know, the reality is that because of the kind of roller coaster nature of rheumatoid are very, you know, I do have some joint damage, and I have got some issues. I do occasionally have mobility issues. I do have kind of a daily level of pain, which, in the scheme of, you know, the scheme of rheumatoid is very minimal right now, which is fantastic. 

But in the scheme of, compared to how I was before, you know, if I was, it’s really funny. It’s also kind of subjective and relative. And the thing that frustrates me a little bit is that, you know, I’ve really had to figure out a lot of my lifestyle and pain management myself. And a lot of that I’ve got from other patients. You know, there’s lots of, you know, kind of day-to-day tricks that make my life easier that I’ve learned just from trial and error, or other people have told me, other patients. There’s also some things around pain management that I, again, learnt on my own or from other people, or just really random sources. I used to have a lady I went to for massage who taught me loads of really great pain management stuff, actually,

Cheryl:  1:14:10

Like, this is why one of my goals of this project is to raise awareness of occupational therapy as a very helpful treatment option that most patients don’t get currently, for reasons I can’t figure out. But we know our occupational therapists can walk someone through a day in your life. Where are all the areas where you’re having difficulty? Is it brushing your hair? Is it taking a shower? Is it, you know, really down to that granular level. But you are never, ever referred to occupational therapy, right?

Sarah:  1:14:41

So, I have never been referred to occupational therapy. I’ve never been referred to a pain management clinic. Yeah, I never — I did have, years ago, a referral to a podiatrist because I had some these feet problems. But, yeah, I think it’s a shame, because, you know, going from that, “Hey, you’ve got something when we can fix you,” to, “Okay, this is it, we’re in it for the long haul. Let’s look about how we can manage it.” Because I, you know, I want to know what can I do to do these things. I don’t want to find — it’s not very efficient finding them all out by trial or error. I think I said in conversation with you before, it took me about 10 years to work out I can buy pull on trousers that don’t have zips on. Yeah, and, you know, it’s something like that that’s so simple that, if I thought of it before, it would have made an enormous difference.

Cheryl:  1:15:35

It’s a burden to you. You already to have to manage all that on your own. Where there is this profession, like, I just can’t help it, because I also teach occupational therapy, and think all these students that are doing all these papers on like, you know, we study these case studies of people that don’t actually exist. I’m like, geez, we should just get a bunch of rheumatoid arthritis patients and have the students do all their progress on them. But the reason about that, the reason that can’t happen is because the confidentiality, or, I guess, giving, having students, I don’t know, I have to figure that out. But yeah, there’s just so many, there’s gaps in them, and we’re not — I’m not saying this just to, like, complain, but there’s really access to care, gaps that aren’t just about access, like, financially. Like, when people say access to care, they usually are, I think, some talking about either, like, you know, physical like, maybe a rural area, or someone in Alaska can’t like access a rheumatologist. They also mean access financially. 

But also, I think access to just like to a referral, like access, you as a patient, I feel, given that you’ve walked me through so many like, think daily life challenges you’ve had, you have very many reasons to have been referred to an occupational therapist. And I don’t know why that — I’m partly on the side doing a kind of needs analysis and trying to figure out what, what side is it coming from. Is it the doctors don’t know our scope, or is it that occupational therapists haven’t — what’s the chicken or egg? Like, have we not ensured that we’re integrated? Like, are we supposed to integrate ourselves better? Or are they supposed to refer? I don’t know what’s wrong, but one of my reasons of doing this is just to address the need I saw of basic life hacks you can learn them from videos, but ideally you could get them, you know, someone to customize them to you. That’s when it’s like, therapy, you know, where it’s like, okay, I’m looking I’m assessing your body, looking at where your joint problems are, and your fatigue is, and making those holistic recommendations.

Sarah:  1:17:29

Well, yeah, because there’s whole communities online where people are like, saying, hey —

Cheryl:  1:17:34

How do I clean my kitchen? Hold my knife?

Sarah:  1:17:38

I can’t make my bed. How can we do that?

Cheryl:  1:17:39

Well, how do they get these students that are spending hours and hours on papers, like, literally, with these hypothetical patients exactly that, I’m like, argh. Sorry, I’m just gonna blow out the audio. Like, oh, I need to bridge this gap. But, like, this is just, anyway. So, initially we talked about fatigue, but now talking about kind of the, it blends into, yeah, the daily challenge, the day in the life kind of challenges.

Sarah:  1:18:04

And to round it back to fatigue, one of the things that I have learned firsthand is that by making my life as simple as possible — I must say right now, I’m pretty good. I’m in a near remission. But that means that I can take the opportunity to set my life up in such a way that if and when, fingers crossed, but assuming that in the future, I will have a heavy dose of fatigue coming out of nowhere, a big flare or something, then actually, you know, I’ve made my life as easy as possible for itself, you know? I have got the tools I need to open that jar or I’ve got the — yeah, I’m not really just, all that stuff, all these little things, because these tiny things, they really add up. And, you know, and I do think it actually in a drip, drip, drip way, it does contribute to your emotional state and mental health. Because if you’re being constantly frustrated, it’s sometimes the little things that really get you. 

I mean, I’ve definitely had experiences where I’ve been in, you know, really high levels of pain, and I can kind of soldier through and soldier through and soldier through, until then I try to undo a button and I burst into tears, you know. And it’s like my husband saying, “Hang on a minute. This is — I don’t understand, because it’s just, why are you upset of this button,” you know? And, and, of course, it’s not just a button, but that’s that level of it’s just that little bit of frustration that takes you past your coping ability, or your, you know, just tips you over. So, yeah, the more of those that you can take out of the equation, the easier it is to cope. Yeah, absolutely, I find, and it’s really good, you know, to optimize your management of your illness. For me, what works is being in supportive patient communities that I can vent, because I don’t want to wear out my family all the time with it, having a good rheumatology team, and also then being able to have access to really solid information from people like Arthritis Foundation. So, I think those three things coming together, it really makes a, you know, a big difference for me. Having all that is really helpful.

Cheryl:  1:20:36

That’s so great. I’m like, literally visualizing a graphic I can make out of that. Yeah, I love that. That’s so, so helpful. 

[Ending outro]

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 going to start in August 2020. Learn more at myarthritislife.net or bit.ly/arthritiscourse, all in lower case. 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. 

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 pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link of 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.