Podcast Introduction

[00:00:00] Podcast Voiceover: Welcome to AiArthritis Voices 360, the podcast solving today's most pressing issues in the AiArthritis community. We invite you all to the table where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Join our fellow patient co-hosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most. Whether you are a loved one, a professional working in the field, or a person diagnosed with an AiArthritis disease, this podcast is for you. So pull up a chair and take a seat at the table.

Episode 84 Introduction:

[00:00:53] Tiffany: Welcome to AiArthritis Voices 360! This is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AiArthritis for short. My name is Tiffany Westritch-Robertson, and I am the CEO of the organization, and I am also a person living with the diseases. My official diagnosis -  or primary one - is  non-radiographic axial spondyloarthritis, but I didn't get that quickly! Oh, no, no! It took me a while, which is gonna lead right into the topic of today. 

And if you're listening via audio traditional podcast, then you won't know this, but if you're on the video watching us now - because yes, you can do that now on our YouTube channel - you will know I'm here with Ms. Kerry and Ms. Kelly. Hello there!

[00:01:38] Kelly: Hello. 

[00:01:39] Kerry: Hi everyone.

[00:01:40] Tiffany: Hello. Hey, Kerry, say hey to everybody and tell them a little bit about you. 

[00:01:44] Kerry: Okay. Hey to everybody, so as Tiffany said, I am Kerry. I am in New York, and my official diagnosis is autoimmune soup. Yes, that's right: that's what my rheumatologist actually told me. And I have a lot of ingredients in my autoimmune soup, that include primarily a rare disease called Sarcoidosis. It's also got a little bit RA, a little bit of Sjögren's, and a little bit of a whole lot more. And we'll get into that in just a little bit. 

[00:02:15] Tiffany: All right. And hey, Kelly. 

[00:02:17] Kelly: Hello! Well, I'm not quite soup. I might be a stew-  I'm a little bit more chunky with some of my things. I currently am being treated for Ankylosing Spondylitis, and for Psoriatic Arthritis. So do I know if I have either one? I don't know, but we will continue to talk about that. 

[00:02:35] Tiffany: We will, we will.

[00:02:36] Kelly: We will! 

[00:02:37] Tiffany: And Kelly is also one of our co-founders at AiArthritis, so she's been around for a while I'd say. 

[00:02:45] Kelly: Since the beginning, just about.

What is a "Mystery Patient?"

[00:02:47] Tiffany: Alright, so if you haven't figured out the “mystery” topic yet - hint hint - boy, do you have three prime mystery patients here to lead this conversation today! And we would not be surprised if many of you out there are like, “oh, ha ha ha, me too!” Or you know somebody who is a mystery patient.

I'm just gonna start off briefly with, what is a mystery patient? Then I'm gonna flip it over to Kelly and Kerry, and they're gonna start telling their journey and why they're mystery patients, and then, I'll do the same. So when we say mystery patient, what we're really talking about or what starts with is when a person can't get a diagnosis. So usually the mystery patient journey is involved with a lot of doctor visits, maybe more than one rheumatologist, and there is not an answer. And in my case, it started with what's called “undifferentiated disease,” which we'll circle back to in a little bit on that. But it's not always just that initial diagnosis, as we're going to hear from Kerry and her journey, and Kelly. So there's a whole variety, a whole spectrum, if you will, of the mystery patient. And that's why we wanted to talk to you all about it today, because it's important to share your story so that people can understand. So organizations like us can create resources to help expedite diagnosis and get to the right treatment, and all of those wonderful things.

So I'm going to ask Kerry first, what is the mystery patient to you? How do you fit into the mystery patient model? 

[00:04:23] Kerry: So I think at its most basic, mystery patient is someone who is not able to get a diagnosis. You know, I personally went through years, and years, and years, and years of that. First with doctors just assuming there was nothing wrong with me, telling me there was nothing wrong, it was all in my head. And I knew that it wasn't in my head, and so there's mystery number one. A few years in, when I finally got a doctor to say, “okay, there is something wrong with you. You have some kind of arthritis, and it's probably autoimmune.” But again, that's as far as we got, and the rest was a mystery.

I eventually went to another rheumatologist, who then spent the next four years trying, and trying, and trying to see if she could fit me into some diagnosis to be able to give me some kind of treatment. And it was always a mystery, because I kind of sorta looked like this disease but didn't really fit, and I kind of sorta looked like lupus, and I kind of sorta looked like RA, but it wasn't really any of those things. At the time we didn't know what it was, and just going to the doctor where it gets to a point when they kind of look at you, and they're basically trying really hard not to shrug their shoulders, but ultimately that's kind of what you get from a lot of 'em for far too long. 

[00:05:52] Tiffany: Absolutely. And Kelly, how do you fit into this whole scheme of the mystery?

[00:05:58] Kelly: Well, it's interesting because my whole life I grew up feeling like I was a hypochondriac. At nine, I remember I came to Children's Hospital in Philadelphia and I was diagnosed with something called “Pain in Children from Undetermined Causes,” and I don't think I've ever shared that with you before. Yeah, so I was out of school for, I think, an entire semester suffering terrible pain, and eventually I outgrew it, or whatever happened. Then around 14/15, came back again, and this time it was in my knees - terrible pain - and I was told I had tendonitis. But it kept coming back every year, which I just assumed that's what happened with tendonitis. I didn't realize that it wasn't a cyclical thing. Then at 22, came back again, but this time I ran fevers and they did all this blood work.

And I remember the doctor called and spoke to my mother - because I was at work and this was probably before HIPAA - and he said, “she's as healthy as a horse, there's nothing wrong with her.” Meanwhile, I'm running fevers and I'm feeling really horrible. So then at 32, everything started, and again I got the “undifferentiated diagnosis,” and then I was called “lupita,” because my rheumatologist told me that I seemed like I had lupus but I could have rheumatoid arthritis, because my first diagnosis was Sjögren’s - which I have no symptoms of Sjögren's other than the joint pain.

So that's sort of why I'm a mystery, cause I don't know how to explain what I have, but I can explain my pain. 

[00:07:28] Tiffany: Hmmm… Wow, I forgot! I forgot that you were Sjögren's! You've been through so many! 

[00:07:36] Kelly: Oh yeah, that was my first. I've been through so many, and I just went to a dentist, and they were asking me what my medication was for. And one is for Ankylosing Spondylitis, and one is for Psoriatic Arthritis, and I think I have more of non-radiographic axial spondyloarthropathy more than I have psoriatic. But I have a skin thing, so I'm just confusion - I'm a confusing mystery! I'm mysterious. Very mysterious! 

[00:08:07] Tiffany: You’re a very mysterious mystery, okay!

[00:08:09] Kelly: There you go. 

Early Diagnosis = Better Chance for Remission

[00:08:10] Tiffany: Well, that is the reason that we wanted to tee this up. By really saying why we all consider ourselves, at some level, a mystery patient, is because this topic is so very, very important because research shows - very clearly - that early identification of what you have and what your disease is, and early intervention that targets your disease or your condition, is very key in order to potentially improve your chance to ever achieve remission. And remission is a word that I think only even I heard of in our community, maybe three years ago, the first time in American College of Rheumatology, and they said there was a research study on remission. I thought this is happening? And what have - 

[00:09:01] Kelly: My aunt is in remission.

[00:09:02] Tiffany: Isn't it? I mean, that's something you've never… You talked to Deb - who is one of our other co-hosts - and she was diagnosed as a teen, years and years ago before biologics were ever even a thing. And you know, they would tell you “well, you'll be in a wheelchair for the rest of your life.” That was what rheumatoid arthritis meant back then! And things have changed so much, and essentially what's happened with the putting forth “treat to target,” which is when you and your doctor work together to put you on a plan that makes sense for you, and then you adjust it every few months in order to make sure that you're seeing some sort of achievement in your progress.

They realize that works, and as a result of that, more people are achieving remission. So the other thing about that is 70% of us will develop comorbidities, which is due to uncontrolled disease. And if you're a mystery patient - and you end up with autoimmune soup, and you end up with flip flopping diagnoses - that is all part of that equation that is partly from that mystery patient, right?

The "Pains" of Being a Mystery Patient

[00:10:03] Tiffany: So Kerry, I'm gonna go back to you, and I just want you to talk a little bit about “Why does this matter to you?” Well, how has mystery patient impacted your life, and why do you think it's important for people to speak out about it?

[00:10:31] Kerry: Well, I think, you know, one of the things that is so important is just get back to what you said about, you know, developing these comorbidities and all these extra things that come up when we haven't been treated appropriately. So back about four years into my trying to get answers, when I finally had that rheumatologist who said “some kind of autoimmune,” and we were going through that cycle. They had tested for RA and everything, and it was negative. They had tested for Sjögren's -  it was negative. But four years later, five years later… Seven years later, perhaps I guess it was, a new rheumatologist, and after some more changes, I now do have RA a little bit, and a little bit of Sjögren’s. That there is actually something even reflected in my blood work, not only just that I'm feeling these things, and so we really need to find - to solve that mystery first and foremost - so that we can, you know, figure out what's going on so that we can treat it; so it's the only chance we have of getting any kind of improvement. 

And I think that's also why it's so important for us to share what it is that is happening with us, because we learn from each other. You know, I have learned so much about Ankylosing Spondylitis at Non-Radiographic Axial Spondyloarthritis, and the fact that I said all of that -

[00:11:59] Tiffany: Very nice. 

[00:11:59] Kerry: - that's right there! I have learned from the two of you, I have learned from a number of other people, about what these conditions are and so I've actually been able to take what I've learned from other patients and bring it to my doctors and say, “hey listen, I wanted to ask you about this because I'm experiencing this symptom and that symptom. Could it be this condition? Could it be Non-radiographic Axial Spondyloarthritis, because they have those symptoms, but it's not showing up in my x-ray just yet?”

So we're able to kind of take those steps, and I think one of the other things that's also really, really important is when we learn from each other and then we take what we've learned and bring it to our doctors. How they respond to it is also really, really indicative of whether they are the right doctor for us or whether they are not. You know, there are some doctors who will 100% completely respect that we come in with experience, and we come in with knowledge, and we come in with understanding of our bodies, and so we know what we're talking about. There are other doctors who will proudly say - and I've seen even on a mug that they share proudly - “Don't confuse your Google search with my years of medical experience.” And our response is, “well, don't confuse the paragraph in your textbook from12 years ago to the 20 years we've been living in this body,” or the 30 or the 50.

So there's that attitude that we'll get to see, and there's that whether they are really able to kind of take what we've said, work with us as partners, and work together to figure out where we are, what we need, and how to best move forward. And we only get that, it only starts from sharing our own stories and listening to each other.

Understanding the Barriers to Getting Treatment

[00:14:01] Tiffany: Absolutely. So Kelly, why is understanding the importance of getting the right diagnosis, and getting treated, and everything that we've sort of been putting on the table -  what do you want to make sure everyone knows?

[00:14:20] Kelly: I had to wait seven years before I actually got on a medication that made me go, “oh my gosh, it doesn't have to be so bad!” Now since then, I've had medications fail. Things work for a period of time and then they don't, but the first time I - in my mind, because my blood work was fine - I didn't qualify, or I didn't need those other medications. I truly believe that, and when they mentioned, like, methotrexate, or a biologic for the first time, I thought I was getting worse. That's what I thought it meant. I've learned over the years that necessarily is not true, but I waited seven years and the damage to my ankle was really severe. The only thing that kind of saved me? I broke it, and the doctor had to scrape out all the damage caused by the disease. Now, do I think it's back 100%? I think the damage is back again, because I can barely walk most of the time.

But for many years I felt like a hypochondriac, like I was crazy; these symptoms must be in my head. I even had one physician's assistant from my rheumatologist tell me that I did this to myself, so I was confused. And when people say, “what's wrong with you?” How do you answer that when you really don't truly know? So to this day, I tend to say “Rheumatoid Arthritis,” because I don't know what else to say, and people have usually heard of that. Or I say “Autoimmune Arthritis.” The other thing I think, by sharing these stories - you know, I'm a blogger; Kerry's a blogger -  I will have people reach out to me on As My Joints Turn, and say: “oh my gosh, I'm so glad I found you because I was so lost and nobody believed me, and I had my husband read your blog, and it's almost verbatim what I've gone through!” 

So sharing a story, I know I personally felt so alone when this all happened. Very alone - even though I knew two people with Rheumatoid Arthritis! -  I felt very alone, because all my friends were getting married at the time, and I was like taking a gazillion pills a day just to try and be able to get out the door for work. So there was just a lot of stuff going on and it was a mystery to me, but knowing that when I met you, Tiffany, and we had very similar story, I was like, “oh my gosh, I am not alone.” And I think that's something that people really need to know. 

I actually had a friend reach out to me the other day, she's very knowledgeable, about pharmaceutical, so she works in the industry. She's been having some symptoms. She called me, she sent me a text and said, “can I talk to you?” And it was, “hey, my doctor wants me to go on…”  I can't remember if it was Plaquenil or if it was methotrexate? It was one of them to try and see if it would help her symptom, and she was like, “is he crazy for doing that?” I'm like, no I think you found a good doctor that's willing to try to see if this can help because a lot of us have normal blood work. 

I have today - I counted before I came on - and all of my toes are swollen, my two ankles are swollen, my hands and my wrists are swollen, my back is killing me. I can't make that up! I can't make up the swelling, I can't. So that's where - when the swelling is so bad, I can't get shoes on - there's something wrong. Maybe it is a mystery, but it still can be treatable because I have so many symptoms in this, you know, stew of mine. But there are medications that could possibly help me feel better. And I feel lucky that I've been with my rheumatologist now, I think 18 or 19 years. Maybe 17? I could be exaggerating a little bit… That's huge to be with a person that long, and I trust her with everything, so I'm very lucky. 

[00:18:01] Tiffany: Absolutely. Well, there's a few things I -  well, I mean, I write like crazy when we do these, because I don't wanna forget to circle back to anything -  but some of the things, “I was so lost, it's in my head, people don't believe me, I feel so alone,” you know. “I tested negative for RA,” or “I tested negative because my blood work was normal,” and Kelly, people coming to you and saying, “oh, this happened” and I can't tell you how many people come to me and say, “oh Tiffany, I just went to the doctor. My primary doctor doesn't know what's wrong. They ran a bunch of tests and guess what? I don't have Rheumatoid Arthritis because my blood work came back normal,” and I just wanna scream! It happened just two weeks ago! I mean, what day and age are we in that doctors don't know you don't have to have positive blood work to have Rheumatoid Arthritis!? Or most of our diseases?

That alone is so frustrating and, just side note, AiArthritis is tackling that. So we are doing a program - AUTO + Inflammatory = X - specifically to try to address that issue. 

[00:19:10] Kelly: I've had rheumatologists tell me that when I did have a positive result, “oh well the lab must have messed that up.”

The Challenge of Being Stuck Under that "Undifferentiated" Umbrella

[00:19:16] Tiffany: Oh, that's interesting.  One of the things that I also wanted to touch on - which loops back to my story and why I care, and I wanna make sure that people understand that this matter -  is for those of you who are diagnosed with “Undifferentiated Disease.” It could be “Undifferentiated Connective Tissue Disease,” “Undifferentiated Spondyloarthritis,” or “Inflammatory Polyarthritis,” - poly meaning more than one. So anything that's got that general term to it, that its falling under the “I'm-not-100%-sure-that-I-can-call-it” Rheumatoid Arthritis, Lupus, or Psoriatic Arthritis,” -  that's called “Undifferentiated.” And we just say “Undifferentiated Disease” is the umbrella, because all of those things could fall under it.

And that was my original diagnosis. Now, granted, this was 12 years ago, but I am part of groups - online groups that are “Undifferentiated” -  and I always thought it was a bad thing. And I wanted to bring that up in “the Mystery Patient,” because it wasn't until just a couple of years ago, again at one of these rheumatology conferences - at AiArthritis, we go to both of the major ones each year and we learned so much - and this is one of those examples. So I was in a session on “Undifferentiated Disease,” and they were saying how often it's not registering enough for any direction because it will tend to be a milder disease than somebody else, okay, that has markers in their blood, and very specific biomarkers, and very specific symptoms, that can lead to a disease. Okay? 

And I thought, well, that's a good way -  a positive way -  of looking at it because I went those two years thinking it's a terrible, terrible thing. So I do want people who have that to look at it as it can be a positive! Now, it also can mean a mystery patient. So there is a flip side to that, like you're not getting the answers. So we definitely wanna zone in on those of you living with that, because we wanna make sure that we're helping you in giving you a voice. But one of the things you said, Kelly, about the treatment - that really to this day still frankly pisses me off - and that is, I was told by that rheumatologist in 2008 that I can't give you medication. I have to watch you get worse. 

[00:21:38] Kelly: Mhmm

[00:21:39] Tiffany: Bull!

[00:21:39] Kelly: That's what I was told. Yep. 

[00:21:40] Tiffany: Bull! I looked back in 2011 - when I started getting more educated and started this organization - and looked back on the criteria for treatment on, and yes, on “Undifferentiated Disease,” there is controversy. If you have mild disease, do we give you aggressive treatments? This was just a debate actually a couple years ago too, at one of these conferences. Do we start you on a DMARD -  a disease modifying agent - like a methotrexate, or something along those lines? 

And the fact is, a doctor can prescribe that to you but it is really a choice at that level. And there was no shared decision making! She never once said to me, “what would you prefer to happen, Tiffany?” Because I cried in that visit and begged her to give me something. I was in so much pain and I had so much fatigue, and I had a low grade fever that wouldn't break. I was miserable.  And she looked at me and said, “we're gonna watch you get worse.”

And I cried in my car and went, “oh my God, it's going to get worse.” And it did, because I still to this day blame her in part for me progressing.  If she had put me on methotrexate a year and a half before I finally got on it, it's very likely I would've went into remission. However, I would've never founded this nonprofit and we wouldn't be here today, so there's a silver lining behind it. 

But I did wanna bring that up because it is important and we're gonna do - part of the show is that we do 360its (it's right in the name) and that means we'll spin off the conversations - and I'm definitely gonna spin off a conversation on “Undifferentiated Disease,” because I think it's very, very important. And especially that kind of moral dilemma that a doctor or a patient might have, like  “well, should I, should I not?” That is a conversation that needs to happen, and patients need to be informed on what those options are and what the outcomes could mean, separate from the doctor's opinion. That's my take. 

How Getting a Proper Diagnosis & Treatment = Life Changing

[00:23:50] Tiffany: Kerry, what do you have to say? We've, we've been kind of going back and forth, and we're swinging back to you. 

[00:24:01] Kerry: Oh, so many! Well… I mean, what is really, really striking to me in so many of these conversations is how much of a difference it can make. I mean, its literally life changing based on what our doctor has to say or not. I remember as a kid growing up, I think for most of us, you know, the idea is we are brought up to learn, “you get sick, you go to a doctor, they tell you what to do, you get better, end of story, have a nice life.” And there are so many things wrong with that with that idea. I mean, it would be nice, but it's not what happens. And so there are so many times, you know, I think each of us has had to fight, and fight, and fight to be heard. Fight, and fight, and fight to be believed. Fight, and fight, and fight to be diagnosed. Fight, and fight, and fight to be treated.  And it doesn't even stop there - because like Kelly mentioned it - you know this stuff changes over time.  And comorbidities come in, additional symptoms, additional side effects from some of the medications… And I mean, there will be new things that come up that become a new puzzle. 

So we figured out the sarcoidosis piece of my puzzle in 2015. As soon as we had that diagnosis, my doctor changed my medication and said, “here were three new things I want you to take,” and literally within a day - overnight - there was a noticeable difference. 

Before I had gotten to that point, I was literally  in such bad shape that I could not move. I could not hold my phone. I couldn't do anything. I was 40 years old and my mom had to come over and take care of me when my husband was at work because I couldn't even get myself up off the couch. And I was - I mean, miserable is not even the beginning of it, you know? We got that diagnosis and medication changed. We started with three medications and one of them was an injection that, literally the next day, I was able to stand up and walk. I was still swollen, but not as much. I was still in pain, but not as much. I was so excited about it! This is the thing that like just stands out to me the most. I was so excited that I had taken my phone and I turned it around and I took a little video - and this is back before everybody was putting everything on TikTok, I don't know if there even was TikTok yet - but I took a video. I was sitting on a chair and I stood up, and that's all it was. And I sent it to my mom and we both cried because we were so happy because there was that much of a difference just from getting the right treatment for the right condition.

And you know, literally life changing, and we all deserve that kind of improvement. But the other thing I was starting to say,  also to keep in mind, is that with these things, unfortunately, it's not linear with us. It's not just a matter of, “okay, we solved it, now you're done.” There are new things that come up, and I had -  so this is where I was going with 2015 - was that it took another 5 years later, and I had some new issues we were trying to work with, and I was referred to - I was told he was the ultimate guru in this particular field of immunology -  and I went to see him and he ran a whole bunch of tests.

And when I came back to get my test results, this doctor looked at me and he said, “I am puzzled by you,” but that was the end of the conversation. He didn't say, “I'm puzzled and we're gonna figure this out,” or “I'm puzzled and I'm gonna help you,” or “I'm puzzled, but there's a lot to look at.” It was just, he was “puzzled” and that was the end. And here I was having to, you know, start all over again and go to different doctors, and go to different medical centers, and go to different states for different centers for specialized treatment, because the ultimate guru didn't feel like putting together a puzzle. And it was just, I mean, it was devastating.

So finding the right doctors and knowing that we have a choice in that, that it's even possible that we can say, “no, this one's not right for me,” and we can go to somebody else - that in and of itself can make all the difference in the world. And that's why we need to keep speaking up, and that's why we need to keep sharing stories,  and that's why we need to keep getting more stories,  and talking to each other and sharing all of that. Because this is life changing, and so many of us don't even know that there's a possibility! We don't even know to ask questions. We don't even know to say, “can I try something else?” or “can I try someone else?” But you know, that's why we have you guys. 

[00:29:21] Tiffany: And of course that one of the things that that's come up a lot and we've done as an international organization - and AiArthritis has the North American seat with the European international group called PARE. So the Europe nonprofits make up this PARE patient organizations in Europe, and they started a new international group. And again, at AiArthritis, we represent North America for right now, and we're meeting all of these other groups from around the world and they too have shortages of rheumatologists - even greater than we do! Like some people in Central America, it's like two rheumatologists! It's unbelievable! And so we do know that at times it makes it even more of a struggle if you don't have that option to fire your Rheumy. And I think that's -  I wanted to put that on the table,  because that's a good 360it to spin off to, because I think that we,  as a global community,  should, as patients,  talk about that and be there for each other,  and what do you do if you really can't have an option?

Remember to Document Everything!

[00:30:30] Tiffany: So we're gonna start wrapping this up here, and I wanted to throw it back to Kelly to start with kind of your takeaway thoughts - why specifically you wanted to put this on the table, or any takeaway tips or thoughts. 

[00:30:53] Kelly: Well, I think documenting your symptoms is a huge thing that people need to do because again, when you are a mystery, when you're a puzzle, people shouldn't have to go in and try and prove how sick they are. You know that to me, when I heard Kerry talking and when, Tiffany, when you said, my doctor said “I have to wait for you to get worse,” I was told the same thing.  And when you think about it, I mean, I just went to the dentist and they said, “oh, you know, you have something in one of your teeth. You know, we should probably be proactive so it doesn't get worse.” So how ironic is it that rheumatologists back in the day were telling us - and maybe some still do that - “oh, we'll have to wait for you to get worse before we can treat you.” 

I just imagine if I had treatment seven years prior, if I would need my cane more and more like I do. So documenting - take pictures of your swollen joint,  document how many days you were running a fever,  document, how much sleep you're getting, or how exhausted you are - and if you can find a doctor, like keep going until you find one that works for you. I feel lucky, Kerry and I, and even you Tiffany, that we live in areas that are close to big cities,  and that helps us when I plan to move and retire. You know, originally I was like, oh, I wanna live in like a little beachy town.  And I thought about it, I'm like, “I need to live near a major city so that I can see doctors,” and I've had ideas for people for remote treatment for years, and I was amazed that when the pandemic came up, that a lot of that popped up. 

But I think sharing your story and the one thing somebody said to me once was, “hey, I had my husband read your blog, and he said to me at the end of reading it, why do you want to be sick?” None of us wanna be sick. We just want an answer. We wanna know what is causing this, and what we can do to have a better life. 

So being a mystery - you're not alone.  Being a mystery is not this bizarre thing that's out on the edge of rheumatology. So many of us are a mystery, and it's just finding a partnership, finding good resources, finding people you can connect with that understand what you're going through, and never being afraid. Like I said, I always felt like it was in my head, you know? Finding professionals, including psychologists, psychiatrists, counselors, people who can help you work through those things. Because once I realized I wasn't making myself sick, that sort of, it was a huge relief and I was able to move forward with more treatment.

So I think being a mystery isn't as much of a mystery anymore, or coming out into the light. And hopefully, like Kerry said, finding somebody who's willing to solve the puzzle. And I'm blessed that I have my rheumatologist to do that with. 

Remember to Take Care of Your Mental Health, too!

[00:33:49] Tiffany: Absolutely. Kerry, is there anything else that you wanted to add as a takeaway?

[00:33:55] Kerry: One thing that I would just sort of add onto what Kelly was just saying was finding your people and finding your doctors, and even, you know, a therapist or counselor or somebody to talk about all of this stuff. I think that's a part that can be a 360it, can be a whole other conversation. 

For so many of us - and I can, you know, a 100% speak for myself - when we're told for years, and years, and years, “oh, you must just be depressed. There's nothing really wrong with you. It's all in your head.” I mean, people are telling us we're depressed,  so much that you start to actually question your own sanity. And is that really what's happening? And at first, when my rheumatologist - who was actually listening to me, actually believing in me, actually trying to figure out what was wrong - when she suggested that I see a therapist - because I started crying in her office when she suggested that I see a therapist - I was devastated because I thought, here I've finally found somebody who gets it and who believes me, and now she's just tossing me off to a shrink again! 

And she had to suggest it a couple more times until she sort of said it differently. She wasn't saying, “I'm not sick, it's just in my head,”  - and that's not to say that anybody who has mental illness is not sick. You absolutely are, and that's a valid thing - but she wasn't saying, “I don't believe that you're really that you're really feeling all of this,” or “I think you're doing it to yourself and that's why you should go see someone.” What she was actually saying was “I believe you, I know how much you're going through and I know how hard that is,” and somebody that you could talk to could just help you adjust to the changes in your life that come from all of that. That you know how to cope with this life-changing illness that changes yourself and your body, and your self image, and your work life, and your social life, and your every aspect of your life.

It's a lot , and it's legit, and it's real, and it is so helpful. And my therapist, who I have now been seeing for almost 10 years, is one of my favorite people. And I don't know where I would be without her guidance over the last decade. So definitely something to consider. It’s not a bad thing, it’s a very, very good thing.

[00:36:29] Tiffany: Wow, well, just in this short time that we've put this topic of the mystery patient on the table, you can hear -  in addition to, you know, the, “there's nothing wrong with you. You must be depressed,” - we mentioned a few of these earlier. I feel like all of us have heard a few of these things and that makes this topic so relatable in so many ways. It could be a mystery on your diagnosis. It can be a mystery on the name of, what do I have? It can be a mystery on where do I go next? Am I getting the answer? So it's thorough..it can go into so many different directions.

[00:37:12] Kelly: It can also, it can also be a mystery why some medications work for some people and not for others.

Final Notes: Share Your Mystery Patient Story with Us!

[00:37:18] Tiffany: Oh my goodness. We could - we should - start a whole, like, thing on what things about our diseases can be mysteries. I bet we get some really good answers! And in speaking of that, we want you to know that in all of the shows, we want this to be an educational takeaway too. 

And if you want to get more involved, we're always here for you to get involved as well. We encourage you to share your mystery patient stories with us at Aiarthritis.org/mysterypatient, and we are going to start collecting these. We're gonna start listening to what you all are talking about- some of your advice, some of your tips - and start to create some kind of guidance for people looking for answers. Who better to do that than the people who have lived it, right? So we encourage you to do that.  Again, that's aiarthritis.org/mysterypatient.

Resources & Social Media Info for Our Co-Hosts

[00:37:56] Tiffany: And before I completely wrap up the show, I wanna thank Kelly and Kerry for joining me here at the table. Kerry, why don't you tell everybody where else they can find you?

[00:38:22] Kerry: Okay, so I am kind of all over the place. I've got a column, I've got a website. All of the social media I go by “FloatLikeAButtahfly,” and just because I'm from New York, that is spelled B-U-T-T-A-H fly. My column at Sarcoidosis News, and my website are both “FloatLikeAButtahfly” everywhere else. You can find me at @ButtahflyK on all the social media.

[00:38:46] Tiffany: Kelly, where could we find you?

[00:38:48] Kelly: You can find me at As My Joints Turn, which is my website and my blog. It’s  As My Joints Turn: My Autoimmune Soap Opera. You can also find me on Facebook, Twitter. I'm there. I post often, and also I have started a little foray into writing books, and I decided to put my diagnosis story into one of the book which talks about a person with rheumatoid arthritis, and it is a romance. It's under a different name because of my job - I don't want my name associated with writing romance -  but it's under George James, and the book is called Dragonfly, and it talks a lot about being the mystery and trying to figure out how to get better, and also living your life as it's going on. I think a lot of people, we’re in such a vacuum and I think people don't understand that stress - that we're in that vacuum still trying to function in the world. So that's where you can find me. 

[00:39:46] Tiffany: So you can find, well, you can find all of us like Kelly said, we hang out talking and chatting too on our social media pages.

So you can find our organization on Facebook, Twitter, Instagram, LinkedIn, TikTok. We're gonna start a Reddit, so essentially, if there's a social media, we're trying to be on it. And then we are at IF - which stands for International Foundation - AiArthritis. So that's where you can find us at all of our social media.

Again, website, AiArthritis.org/mysterypatient, to submit your mystery patient story, and while there, take a look at all of our other amazing programs. If you love what we do, we certainly would appreciate your support by clicking on that donation button. Every dollar, every amount that we get, we put to good use to make sure that patients are getting the best resources and opportunities to really make a difference in the world. So again, thank you, Kerry. Thank you, Kelly. Thank you all for tuning in. Until next time, signing off from AiArthritis. We're so happy that you have taken this time to join us at the table.

Podcast Closing Segment

[00:40:59] Podcast Voiceover: AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Find us on the web at www.AiArthritis.org. Also, be sure to subscribe to this podcast and stay up to date on all the latest AiArthritis news and events.