Video of Conversation

Summary:

Dr. Hosey shares her personal journey getting diagnosed with with Sjögren’s syndrome, after experiencing repeated instances of medical gaslighting. Cheryl and Dr. Hosey delve into the importance of accepting the unpredictability of life with chronic illness and redefining what constitutes a “normal” life. This includes a discussion about resilience, mindfulness, and the potential for personal growth in the face of chronic health struggles. 

Dr. Hosey’s shares how she turned her pain into purpose, referencing her upcoming book, ‘Girl on a Gurney: Trading my White Coat for a Hospital Gown’. She also provides tangible solutions for medical gaslighting, including medical student education in this phenomenon. 

Episode at a glance:

• Medical Gaslighting and Diagnostic Challenges: Dr. Hosey recounts her experience with medical gaslighting, where healthcare professionals dismissed the severity of her symptoms and refused to acknowledge her genuine health concerns. She finally gets her Sjogren’s diagnosis after repeatedly having to seek providers who would listen and take her concerns seriously, despite Dr. Hosey’s medical expertise as a physician’s assistant. The conversation delves into the diagnostic challenges faced by individuals with chronic illnesses.
• Power of Meditation: Dr. Hosey highlights how meditation has played a crucial role in her healing journey. Despite initial skepticism and the presence of intrusive thoughts during meditation, she discovered that it was the key to connecting with her inner self and finding solace amid physical suffering.
• Acceptance and Transformation: The conversation emphasizes the significance of acceptance in living with chronic diseases. Dr. Hosey shares her personal journey of accepting her condition and transforming her perspective, turning her pain into a purposeful mission to help others.
• Reimagining Chronic Disease and Disability: Dr. Hosey advocates for a societal shift in understanding chronic diseases and disabilities. The discussion touches on the need to redefine societal norms and treat everyone equitably, acknowledging that a large percentage of the population lives with at least one chronic illness.
• Gratitude and Mindfulness: Cheryl and Dr. Hosey underscore the importance of gratitude for the little things in life, especially when facing health challenges. Dr. Hosey encourages individuals to find joy in everyday moments and practice mindfulness to navigate the uncertainties of living with chronic conditions.
• Individual Healing Journeys: Dr. Hosey emphasizes the uniqueness of each individual’s healing journey. She encourages people to avoid comparing themselves to others and to embrace the uncertainty that comes with living with chronic conditions.
• Words of wisdom for newly diagnosed patients: Release expectations of what you projected your life would look like. There will be a learning curve.
  

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! 

Speaker Bios:

Dr. Rebecca “Becky” Hosey 

Dr. Rebecca “Becky” Hosey is a physician assistant and chiropractor residing in New York. She has many years of clinical experience in the fields of pain medicine and psychiatry. She became ill in 2015 and was eventually diagnosed with Sjögren’s Disease. She is the Author of Girl on a Gurney: Trading My White Coat for a Hospital Gown; a soon to be published book which reveals a unique perspective of an unwell medical provider struggling to navigate a convoluted health system

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

• Links to things mentioned in episode or additional listening
  • Brene Brown on Empathy
  •  ‘The Power of Now‘ by Eckhart Tolle.
  • It’s Not Just Dry Eyes: Deep Dive into Systemic Sjogren’s Disease
    
• Speaker links
  • Rebecca Hosey author website
  • Rebecca Hosey YouTube channel
  • Rebecca Hosey Facebook page
  • Rebecca Hosey Instagram
  • Rebecca Hosey – Medium
    
• Cheryl’s Arthritis Life Pages:
  • Youtube channel
  • Instagram @arthritis_life_cheryl 
  • TikTok @arthritislife
  • Arthritis Life Facebook Page
  • Cheryl on Twitter: @realcc 
  • Arthritis Life Podcast 
  • Facebook Group

Full Episode Transcript:

Cheryl:  00:00

Hey. I am really excited today to talk to Dr. Rebecca “Becky” Hosey, who is going to, we are going to talk about Sjögren’s, we’re going to talk about medical gaslighting, her story. I’m really excited. So, welcome.

Dr. Rebecca:  00:13

Thank you so much for having me.

Cheryl:  00:15

I’m excited. I met you at the Autoimmune Summit last Fall of 2023. So, just a little shout out to those kinds of educational events from non-profits are so great for getting the community together and learning from each other. But first of all, I want to know a little bit about you, you know, where do you live, and what is your relationship to chronic illness? Although I already kind of gave it away in your introduction.

Dr. Rebecca:  00:42

Oh, so I live in upstate New York, and I have Sjögren’s disease. I am also a medical provider. So, I’m a chiropractor times 20 years, and a physician assistant times 14. So, I also have experience with chronic disease in the medical realm, as well as a provider.

Cheryl:  01:01

And that’s so, that’s so great. Having both the inside out view of the healthcare system and the outside in, you would think that that would make it easier for you as a patient. But as we’ll see, it doesn’t always. But I, actually, before we move on to your personal story, can you explain what is a physician’s assistant, also known as a PA?

Dr. Rebecca:  01:24

Sure. So, a physician assistant has two years of really intensive training. So, bachelor’s degree, of course, with pre-medical sciences, biology, chemistry, physics. And then they go on to a two-year program, which involves both academics as well as clinical experiences. And at the end, you’ll receive a master’s degree. There are some doctorate programs. And we actually can practice medicine. Of course, we are under the supervision of a physician. But we actually really have the ability to move and work in multiple different specialties. So, actually, what’s great about being a PA versus a medical doctor is the flexibility. So, if I wanted to work in, say, pediatrics, and then I wanted to work in cardiovascular surgery, I could just go ahead and make that adjustment.

Cheryl:  02:22

Yeah. And I think it’s really good for patients to know that when they see that designation, like, physician assistant, it’s not the same — like the word ‘assistant’ doesn’t mean that it’s an unskilled, like, it is a skilled licensed profession, you know. I’m sure you have to do continuing education. You’re licensed with your state, stuff like that, right?

Dr. Rebecca:  02:43

Absolutely. And there has been a change. It either is ‘Physician Associate’ or ‘Physician Assistant’. So, I still kind of go by physician assistant, just because that was my designation when I graduated. But ‘Physician Associate’ is also an accepted term.

Cheryl:  03:00

Oh, that’s really great. I didn’t realize. There’s so many — oh, my gosh, we could talk all day long about words and, like, the different meanings, you know how, like, we have talked numerous times on this podcast before about even just the word ‘arthritis’ and how misleading that can be in. So, in occupational therapy, we don’t just do jobs, but I do really want to — I’m getting better at being linear and following my schedule, my outline here. So, you know, I really would love to know a bit about your diagnosis story/saga, you know, what were some of your first symptoms? And how did you eventually get your diagnosis of Sjögren’s disease?

Dr. Rebecca:  03:37

So, it was a very convoluted one. Well, let’s just say that. So, I was working as a physician assistant in interventional pain medicine, that’s where most of my clinical experience actually lies in that field. And in 2015, when I just turned 37, I developed fatigue, muscle weakness, and joint pain. And the fatigue was just it was so profound. 

I did what we’re all supposed to do, which is call primary care. And I went to primary care; I was diagnosed with some unspecified viral infection. I was given kind of, you know, the really standard instructions — rest, fluids, et cetera, call back if you’re not improved. 

The issue became when I actually got worse and not better over weeks. I returned back to primary care. And the primary care provider actually dismissed me. She said to me, “Did you follow my instructions? I cannot believe you’re not better.” And I’m thinking, wait a minute, you know, like, I was so taken aback. I mean, I was just floored. Here I am, this well-respected health provider in the area. I’d only met this primary care provider one time, several months before when I established care. So, this was like my first kind of, you know, say acute visit with her. But totally changed, I mean, from the initial visit. I mean, she acted like I was, you know, putting her out like it was an inconvenience for her to see me. And I was not better. So, yeah, she —

Cheryl:  05:14

I’m so sorry you experienced that. And I just want to pause for a second to, you know, acknowledge how difficult that experience is. And I know people listening, oftentimes, you blame yourself already, you know, before coming into the appointment. And then to have your provider, who’s in that position of power, even though you are also a health, you know, provider, as a physician’s assistant/associate, in that context of that appointment, you are in the — she’s in the power position, because she has the power to diagnose you in that relationship. 

And to say that you’re not, because the fact that your condition isn’t better means that you must be doing something wrong, or maybe you’re lying to me, it’s just such a — what’s the word for that? — it’s such an unjust way of looking at it. So, I’m just, I’m sorry, you had to go through that. But you didn’t have to, I’m sorry you did go through that. Yeah.

Dr. Rebecca:  06:12

It just floored me. I could not believe. So, thank goodness I have this medical education. I said, “Can you please order this test, this test, this test,” because she really wasn’t going to order any tests. And of course, you know, just generalized labs came back abnormal. 

My white count was elevated, my platelets were elevated, my sed rate was elevated. And but follow up, you know, following up with her, she still didn’t believe me even though I had this objective data to say there’s some kind of like, you know, information going on, right. So, we know that most diseases, the underlying cause is actually inflammation. So, I mean, we’ll see nonspecific findings, but some findings, right, some objective findings. But, I mean, I had to claw and fight to get referred to other specialists. 

And finally, you know, one visit, she said to me, “You don’t look sick. And I don’t think you want to get better.” Yeah, I can’t even make this up, really, honestly.

Cheryl:  07:13

I just hurt my jaw dropping my jaw to the floor. Literally.

Dr. Rebecca:  07:19

Yeah, yeah. I basically would not cry in front of her. I walked out of the building, and tears started streaming, you know, streaming down my face. And at that moment, I will say I had a pity party. But it was, you know, sad for myself, but within probably, I don’t know, three seconds to a minute, selective sorrow. 

And that was even more emotionally overtaking. I was just sobbing, like, standing next to this tree, like leaning against this tree in this parking lot. Because I thought about all the patients that are way more disadvantaged than myself, how are they successful navigating, when here I am, you know, kind of higher up on the food chain in the medical food chain kind of person, I mean, I know the inner workings, you know, I know what tests to ask for. I know what referrals to ask for, you know. How do others much more disadvantaged navigate successfully? 

And, you know, the answer is, they don’t. And I felt the sadness. And I knew at that moment, I wanted to — well, first I said, I’m going to figure out what’s wrong. And I’m going to help others. I’m going to write a book; I’m going to do something. I didn’t know exactly how that was going to take shape.

Cheryl:  08:36

I mean, that’s incredible. And I totally agree with you. I mean, the reason that autoimmune illnesses take on average — I always butcher this statistic — but it’s something like four to six years to diagnose. It’s worse if you’re a female, worse if you’re younger. 

And I think providers, it’s easy to have an ‘us versus them’ mentality and say, like, they’re all mean, and they all hate us. And really, in reality, medical providers like yourself are probably not often taught, you know, and like myself, taught, you know, if you hear hoofbeats think horses, not zebras. 

The most Occam’s razor — is it how you say it? Occam’s razor? Yes, yeah, the simplest explanation is the best. And that’s not true for everyone. And the reality is so much messier. And no wonder, I mean, someone asked me once when I was pursuing my diagnosis. At that point, I was only 20. I hadn’t ever had any health issues before. I just, I was used to blindly trusting doctors and that was, that was what was so cognitively dissonant for me was that, I’m like, doctors help people. I’m not being helped. But I can’t reconcile these two because I wasn’t willing to –  I didn’t want to believe that doctors could be so unhelpful as they were. Like, something is wrong. I can’t figure out this problem. 

And I kept saying it was like my body’s on fire, and you call the firefighters and they’re like, “My diagnosis is your body’s not on fire. And like, you have nothing, there’s no fire,” and you’re like, but there, I know there’s a fire. But I also respect you and you’re telling me there’s not a fire? So, it’s a very, yeah.

 And at that stage, you had been a health care provider for over a decade, so maybe you — had you already been introduced to the concept of medical gaslighting at this point, or seeing patients in your pain clinics that had kind of gone through something similar? 

Dr. Rebecca:  10:31

Yeah, you know, great question. Because I’ve always been very compassionate, very empathetic, but honestly, I just did not get it until it happened to me. I didn’t get it. Yes, I saw patients for many years as a chiropractor and a physician assistant, that, you know, would tell me, like, “My doctor is not listening to me.” And I guess, you know, I just did not get that until I myself was a vulnerable patient. I did not get it.

Cheryl:  10:59

Well, that takes a lot of, I would say, vulnerability and humility to — I don’t wanna say admit that, but to acknowledge that. And I don’t know if this is gonna sound like the weirdest analogy, but I feel like it’s kind of like we all think we would do it differently when we’re looking at someone else’s experience. 

Like, I’m literally watching the Olympics. Like, if I were watching — let’s say better example would be like American football. I was watching last night and I’m like, “I would go this way.” I’m like, what am I talking about? Like, I would die if I was trying to play; I’d get tackled and die. Like, why do I think — it’s our brain’s way of protecting us to say, “well, if I or my medical training would have protected me, my communication skills would have protected me.”

 So, I think in a way it’s almost so scary for us to confront the randomness of life that it’s easier to say, “Well, it wouldn’t happen to me,” so you didn’t get it. And there’s a saying in chronic illness, “You don’t get it till you get it,” sounds like that resonated. 

How did you eventually weasel your way into rheumatology, the rheumatologist, to diagnose — I’m saying ‘weasel’ sarcastically, meaning like you had to really advocate to get yourself there.

Dr. Rebecca:  12:10

Well, yeah, that, it’s a whole — I mean, how much time do we have, honestly.

Cheryl:  12:15

I wish. Sadly, this could be like a 24-part series. Yeah.

Dr. Rebecca:  12:20

Definitely. Definitely. So, my primary care provider refused to refer me to rheumatology, even though I did see like 10 other specialists and, you know, just my medical knowledge. I said, “No, I gotta get to rheumatology,” you know?

 So, I did weasel my way to get an appointment without a referral. So, yes, I did. I told the receptionist a little too much about my life, I’m sure, on the phone, “I’m a physician assistant, I, you know, I’m working. I’m having these symptoms, my sed rate is 70, you know, I need to come in and be seen,” so, but I still had to wait months to get the appointment. 

And I know, this irritated the primary care provider very much so. But in any event, I’ll just give you the quick synopsis. When I showed up to rheumatology. That was an unbelievable experience. And I was so medically gaslit there. So, I don’t know if you want me to stop and just define medical gaslighting. 

Cheryl:  13:23

Oh, yes. Thank you for remembering. I was saying before we started to hit record that maybe we should define it for people who haven’t heard this phrase before. What’s your definition?

Dr. Rebecca:  13:33

Sure. Well, you know, gaslighting is a psychological manipulation, okay? In the medical realm, this can take place as a provider basically discounting the patient’s symptoms, making them believe that it’s all in their head. So, with, you know, we can kind of get into some of the causes of why I believe that occurs.

Cheryl:  13:58

Yeah, yeah. And I just one thing because I know some people who are literary — or what’s the word — who are really into the official meaning of words, there’s a little bit of a debate in the field around, in the medical field, in the chronic illness world, around the word gaslighting. Originally, gaslighting meant a psychological technique that was overt and intentional where you intentionally, you know what reality is. You, as a manipulator, know what reality is. And you say, “I’m going to make this person think that they’re, quote unquote, ‘crazy’ by telling them the reality is not true.”

Whereas the difference in the — I kind of call it sometimes ‘unintentional medical gaslighting,’ because I think most providers are not evil manipulators who end up contributing to medical gaslighting. They truly think you, Dr. Becky, were not sick. Or me, Cheryl, was just an anxious 20-year-old Type A person. So, then they weren’t like, “She has rheumatoid arthritis, but I’m going to tell her she doesn’t because I’m evil,” they’re kind of saying, you know, they’re like, “No, when I hear — I heard hoofbeats, I think horses, not zebras. She looks fine. She’s a 20-year-old,” talking about myself. 

And, you know, she’s losing weight. Oh, also the other one for me was a, trigger warning, eating disorder. So, they thought I had an eating disorder because I had severe muscle mass loss from rheumatoid cachexia. So, I went from 130 pounds to 105. They told me that, they called my parents behind my back and said she’s hiding an eating disorder, when I had never had any history of an eating disorder or obsessive, you know, behavior around food or body image or anything like that. 

In fact, I was starving, but my body wasn’t retaining the food. Long story short, so yeah, I still think that the intent or the impact is that the person feels gaslit because their reality has been discounted. You as the patient are saying, “I’m sick,” the doctor is saying, “You’re not sick.” And I’m the one in the position of power to determine whether you’re sick or not. So, what I say goes.

Dr. Rebecca:  16:03

Right, right. So, yeah, so let’s talk for a minute about consciousness versus unconsciousness, right? Or, you know, these providers are just part of like the system, okay, that’s broken, that’s fractured, the health system. 

Okay. So, yes, exactly. So, I do believe that most providers go into medicine for altruistic reasons. I really do believe that. But I do believe there’s some corruption of these providers along the way, because of all the constraints of this fractured medical system. So, I mean, really, I do believe there are, you know, two major kind of components to this medical — behind this medical gaslighting. One of them being society’s influence on medicine. So, society, you know, has always had an impact on medicine, traditionally. The toxins of society. So, what’s happening in society, all these intolerances, the biases, prejudices; this is all happening in medicine, all of it. And, you know, that’s very rarely spoken off. 

Those particular intolerances, and those particular cultural ideals also lead to a lack of research. So, for instance, we’ll just take, you know, autoimmune disease, right. Sjögren’s is, in most autoimmune diseases, are female dominant. And Sjögren’s, right, the average person is a female, 90% female. They are diagnosed 40s the 50s. So, middle age, right. I don’t have to go into kind of how middle-aged women are viewed in our culture right now. 

So, we can picture that there’s crumbs of research, right? So, crumbs. So, when a female presents to the doctors complaining of joint pain, fatigue, are they — the provider, first of all, has a lack of information, okay. They have a lack of information. And maybe they also have their kind of like internalized kind of intolerances, internalized kind of things. So, not vicious, as far as, yes, like what you’re saying, like, is this a conscious thing or an unconscious thing, right. They’re falling into this routine. 

And that with the transformation of medicine, right, the corporatization of medicine, which is a fancy term just means that these non-medical corporations are buying up these medical facilities, these medical businesses. I mean, we don’t, we rarely see these Mom and Pop little shop, you know, small kind of businesses where you get more personalized care. And now these providers have so many constraints. 

So, yes, we’ll just say fictitiously, Mrs. Jones shows up, right. And Mrs. Jones is complaining of the same things I did, that I had, all right. So, fatigue, muscle weakness, joint pain, I also had dryness. So, and now you have a provider that’s overtaxed, so they are seeing too many patients in a, you know, a short amount of time. They have a lot of administrative duties, their autonomy is gone, because of this representation, and they also don’t have information because there’s a lack of research. That will just elevate the chances of medical gaslighting.

 So, yeah, so I don’t necessarily think it’s a vicious thing. I think it’s also this kind of cyclic issue that honestly, we could spend probably, like you said, 24 sessions on. 

Cheryl:  19:14

Yeah, no. I love how you will wove these, the 20,000-foot view into it. Because you’re right, the patient — or me, when I think of my own history of medical gaslighting — I kind of get fixated on the individuals and think, “If I could have just told them,” “If I could have just said something different.” 

And it’s important when you’re looking at maybe solutions to this or root cause analysis, what caused that, what larger in society caused some of these things. And you’re so right. It’s the profit-driven corporate health care system. That’s never going to — a profit driven system is never going to benefit the people with chronic illnesses because our illnesses are expensive to maintain. They want to just get us out of their way, you know, give us as little as possible. 

And, you know, the societal, they just started in the American College of Rheumatology, or sorry, I should say I just became aware of that, so maybe they started this like years ago, but I don’t think it was done, let’s say, in the 90s. A whole area in the annual meeting, the annual conference at ACR Convergence is a whole section of the program called ‘Social Determinants of Health,’ you know? And that’s looking at racism, sexism, ableism, and socioeconomic status, rural versus urban splits, all things like vaccine hesitancy, and what contributes to that. And so, anyway, I’m just rambling, but I’m trying to kind of just reflect on these societal issues that lead to gaslighting. 

Dr. Rebecca:  20:58

Yeah, exactly. And, you know, I think many medical providers are really great about treating the acute, right, this diagnose-treat-cure that’s, like, nailed in all medical education. Okay, but what happens when the patient doesn’t get better, when they still come back? The same complaints, like I did, you know, when they — when they’re not, when there is no cure? So, what, how is it handled? 

And I think, really, medical education from, you know, students all the way up to the more seasoned practitioners, I think, there has to be reform and I think that practitioners need to be educated. And that’s one of the things that I do is I go into these medical programs, these medical institutions, and I talk to the students of medicine. I tell them my story, and we talk about solutions.

Cheryl:  21:45

I’m — that was, you totally anticipated my next question, which is, like, what are the things we can do to combat medical gaslighting? We are going to go back to that point where you actually got, finally got, this is the summit of the mountain of the diagnosis hero’s journey. But yeah, so stay tuned for more.

So to combat medical gaslighting, having more of this information in the medical education, even naming it. I think there’s just such a power in naming. I didn’t know what gaslighting was. I never heard the phrase ‘medical gaslighting’ until I had been active on social media. And once I heard that phrase, it like unlocked something in my brain. I even talked to my therapist about it. And I was like, this makes me realize, again, it made me realize it is more of a universal experience. It’s not just me. 

Like, I kept thinking because of wanting the illusion of control, well, I was too deferential to authority, I didn’t advocate for myself well enough, maybe that’s why. So, better education on the provider side. 

I was also thinking, what do you think about this, and this is a half-baked thought, so feel free to contribute to it or say no, but I’ve done a lot of work on Acceptance and Commitment Therapy, which is the therapy approach I find most helpful for living with chronic unpredictable disease. And one of the things that you’re encouraged to do in that framework is accept uncertainty and accept that, like, life isn’t black or white. And I feel like that’s so antithetical to how medical education is. 

That’s all because of – medical education traditionally is like diagnose-treat-cure, fix stuff. And it’s very threatening to people who are used to fixing to be faced with a problem that they can’t fix. So, I don’t know what that would look like other than teaching, I think, teaching the medical students and the medical providers, like, saying out in the open, sometimes you’re going to be wrong/ Sometimes you don’t have enough information to make the perfect diagnosis. And that we need that to be a situation that is dealt, or that is met with your own self-compassion, rather than your coping mechanism blaming the patient or blaming some, you know what I’m saying? I don’t know. 

Dr. Rebecca:  24:02

Yeah, absolutely. You know, so, like I said, I do have this unique perspective, right? So, as a provider, I can tell you that we do have a lot of pressures to get it right and get it right the first time, okay. So, there’s a lot of pressure on us, all right. So, time is money. And, you know, we really, we’re really pressured.

 So, when I talk to these students in medicine, I say to them, it’s okay to be wrong. It’s okay not to have an answer. It’s okay to just validate the patient’s concern, validate them and say, “I don’t have the answer, but I will try to find the answer. I will try to get you to the right person,” you know, there’s that investigative part, right? We’re really detectives. And you know, if the system keeps putting all these constraints on us, right, taking away our time, and putting all these pressures on us. Again, medical gaslighting is just going to continue to flourish. However, honestly, if we just sit with a patient and and really say, “I don’t know, but I will do the investigation. I will talk to, you know, team —” really good medicine is team-oriented. So, “I will talk to a colleague. I will, you know, try to help, at least get you somewhere to get this figured out.”

Cheryl:  25:20

Yeah, I love that. I think that — I’m going to just bring up that in my own therapy, at one point, my therapist was like, I literally, I’m trying to figure out to condense the story. But long story, I was teaching at an occupational therapy assistant program. And I was struggling with a lot of anxiety around not knowing all the answers. And it’s one of the things where when you say it out loud, you’re like, “Well, I guess no one knows all the answers.” But I was still struggling. Like, when a student would ask something, I always felt like I had to have an answer.

 So, he’s like, “Your goal for therapy this week is to say the words ‘I don’t know’ in front of your whole class that you’re teaching.” And that was really hard for me. And it wasn’t just like, she doesn’t know it all, but it was like, it’s threatening to feel like, it’s like anxiety is — the antidote to anxiety is like black or white answers, right? So, saying, “I don’t know,” and living in the uncertainty is the hard part. 

And I think maybe teaching providers, like, I don’t know if there’s ever a point in, yeah, med school or PA school, where they’re taught it’s okay to say you don’t know, it’s okay to say, and to say that. And I think that we also need — this is where it gets a little tricky, because I facilitate support groups for people with inflammatory arthritis. And a lot of times, I’ll hear the patients say things like, “Well, the doctors didn’t even know, the doctor said that they had to ask someone else.” And they’re like, thinking that this is threatening the doctor’s authority. And so, we also have to educate them to be like, you know, these are not easy diagnoses. It’s not like, you know, a giant mole on your face, it’s like, I can look at that and see that you have skin cancer, you know? It’s not like that. And so, it’s actually the mark, I’ll tell people, it’s the mark of a good doctor, when they say they don’t know, actually, it’s not a sign of a bad doctor.

Dr. Rebecca:  27:08

Exactly. And, you know, when I also lecture to the students, I do, I make that point, you know, where it’s okay. And your patient will respect you enormously if you say, “I don’t have the answer, I have to, you know, really look this up.” And I think maybe as a provider saying, you know, there, there isn’t a lot of research on this, you know, there’s not a lot of information. So, this is why I don’t know, this is where I go look it up or ask someone, you know. 

But honestly, just really, I think just, you know, that rapport, okay, the sacred trust that you have, this provider/patient relationship, you know, this connection, and how a lot of the medical system failures just destroy that.

Cheryl:  27:52

Yeah. I remember the first time — I just think little quick phrases we could teach the providers to say, or have a practice or try, and one of them for me was just like, “Wow, you’ve —” literally the validation, like, “You’ve been through a lot. That’s a lot.” I remember the first time a physical, it was actually a physical therapist. So, I’m an occupational therapist, which is a separate field. It’s often confused with physical therapy, but we are different. So, like different licensing, different tests, different scope of practice. They do overlap, but they are officially different. 

And so, this was a very expert, you know, very experienced one. And when I — and I kept minimizing myself, “Well, but this, but this, but this, and then this happened, this happened.” And he’s like, “You’ve been through a lot.” And I will never forget that moment, you know, because it was just like, he really, it wasn’t just that he said that. He just — I could tell he was attuned. He was listening. He was present; he believed me, you know? And it’s like, every time — it’s like, every time a bell rings, an angel gets its wings, like, every time a doctor believes you, it heals someone who’s had medical gaslighting, you know?

Dr. Rebecca:  29:00

Yes, exactly. And I think that’s a great point, is, you know, we’re always in the, as medical providers, we’re always trying to fix everything. But it’s okay. It’s okay not to fix everything. It’s okay. So, just, you know, sitting with a patient, validating them, and really just, you know, asking them questions, asking them questions, how their disease impacts their lives every day, you know, really connecting.

Cheryl:  29:28

Yeah, yeah. And that, and again, that’s the time that we can spend with the patient, has been so eroded over, you know, due to like, again, that profit incentive. But it doesn’t take, I would argue that, you know, you really can be present in even a 15-minute encounter, you know?

So, the other thing that I’m curious to hear your opinion on, I’ve tried over the years to kind of suss this out and I almost feel like I need to talk to like a lawyer. But the thing that I find really frustrating about medical gaslighting is like in the legal system, it’s like you’re innocent till proven guilty, right? It’s like absence of proof that you murdered someone doesn’t mean that you murdered them. It just means we don’t have proof. B

ut it feels like with, if I present to the doctor, if Patient X presents to a doctor with these kind of diffuse set of symptoms, it’s unclear, like, I have joint pains worsening in the morning, it’s bilateral, but like, my sed rate is looking good. And like my, you know, all these other blood markers aren’t really clearly off the charts yet. It’s like, so often, it’s, “Well, we don’t know for sure what’s going on with you. So, most likely, you’re just anxious or you’re just,” you know what I’m saying? 

It’s like why,  if I it would have been a such a different situation, if when I presented with all of my systemic symptoms of rheumatoid arthritis, and then the one joint that was ‘sprained’ — I’m making air quotes here — I had a sprain. I was a college athlete like starter, all-conference, picked as a defender, like, I was not somebody who was going to be, you know, on my, laid back because of one finger that hurt. Like, that was the very least of my worries. Now, of course, I now know that was my first symptom of rheumatoid arthritis, because it was hurting for like a year. But I was like, whatever, who cares about this? 

And so, it’s like, if they had said, “Like, look, I believe that — I believe you.” Like, literally the words, I believe you, like this — I did have a lot of mystery things going on. Like, I did also have really dry eyes, and I had unintended weight loss, weakness, fatigue. And, you know, and I was anxious about that. And it was like, all that they care about was you’re anxious, you must be just anxious, you have health anxiety, you’re a hypochondriac. 

If they just said, like, “There’s no other real explanation I can tell for what’s going on with you, I believe – and like, no wonder you’re anxious, who wouldn’t be anxious?” you know what I mean? And that conversation could have been so different. 

Even if they had no answers, no diagnosis, just as being able to say, “I believe that you’re really hurting. You are sick, but we don’t know why and what it is. It could be a little virus that it’s gonna be gone and you’re gonna be feel fine in a week,” you know what I’m saying? But I don’t know if that’s like too difficult of a conversation to have. 

Like, why isn’t that the default to say, like, to believe patients rather than jump—? I just personally believe there shouldn’t even be a diagnosis of hypochondriac. Because I think it’s like the death penalty. Like, if you can’t be sure that that’s what it is, then we shouldn’t do it. But I don’t know. What do you think? 

Dr. Rebecca:  32:42

Yeah, exactly. You know, so I think, you know, we need to humanize medicine and that’s exactly what you explained, okay?  So, the patient has definitely fallen out of the center of care, which just is so paradoxical. It doesn’t even make sense to say those words together. Okay. But really, we need to rehumanize medicine. I mean, many of us can remember a time when medicine was so much more personalized, right. So much more personalized. You know, and again, I think this corporatization really, really has affected that, you know, you walk in the receptionist knows your name, the nurse, they know your family, you know, it’s just, it’s so depersonalized. And really, we’re losing the humanity. We’re losing the humanity. And, you know, I do want to say, Brené Brown, this wonderful social scientist, I don’t know if you’ve heard of. Love, love, love. 

She has a quote, and I don’t want to say exactly, I’m just paraphrasing here, about really true empathy is believing what someone tells you and seeing it as they see it, not as you see their symptoms. So, and I give this example to the students that I talk to, and I say, “Listen, your Patient X may come to you, and they may have a sore throat, but it’s nothing like what you’ve experienced before. And it’s nothing like what Patient X has experienced before. So, it’s really important to accept what they’re saying. You accept it, believe it.”

Cheryl:  34:15

What’s been the response when you’ve gone to talk to medical students about this?

Dr. Rebecca:  34:21

You know, I wasn’t sure at first. I wasn’t sure. But honestly, the response is, it’s been very, very positive. You know, they, it’s amazing. I have a line of students, like, every single time after I speak, they come up to talk to me, and many times, actually, I should say, basically, at every single lecture that I’ve done, I at least have one female that says, “I’m being worked up for some kind of autoimmune disease,” you know, but really, they — this is so positive, and I know we’ve been talking about a lot of negative. So, I am so glad that I have the chance to interject this. They know the system is fractured. And they want to change it. They do. They want to change it. 

And the thing is, if my story touches even just a handful in a group, like last month I talked to I think it was 69 students. Honestly, if I just reach just a handful, think about how many more patients they’ll see over their career, versus just me seeing my, you know, X amount of patients per week. So, I really feel like I am changing medicine. Only one at a time. 

Cheryl:  35:34

Yeah. And that’s why storytelling is so, you know, as humans, that’s our primary, historically mode of communication, just sharing stories. So, I think, yeah, I’m excited for your book to come out and putting the plug in. I haven’t read it yet, I just trust, just having known you that it’s going to be amazing. But I don’t want to forget to get back. So, you were saying, were you still gaslit at the rheumatologist or no? Did they—? 

Dr. Rebecca:  36:03

Oh, yeah, it was —

Cheryl:  36:04

Oh, no! No!

Dr. Rebecca:  36:05

I don’t know if you — I’m not really sure if it was worse than the primary — I’m not really sure. You have to read the book and decide for yourself. So, yeah, so it had been seven months now since I had the symptoms. And the symptoms were just getting worse. I mean, I could work very sporadically, you know, say I’ve worked for a day and then I was out for like three or four days just trying to recoup. 

I was honestly, like, dozing off at the wheel because of fatigue was just so severe. You know, I sometimes needed help like walking to the bathroom, you know, just ADL stuff like washing my hair. I mean, just unbelievable at 37. So, I walk into this rheumatologist. So, here, I’m so hopeful and I really believe that the answers are going to be revealed, you know that this was such an important, just a pivotal, cause I’ve seen 10 other specials. 

So, I had these two index cards, and one index card had my symptoms front and back. And the other index card had my symptoms matched with tests for diseases that had been yet to be rolled out. And I locked in with also a binder of my medical records. See, this is all again, because I’m blessed that I had this ability to put this all together. It was you know, it was incredible. It was very, very organized. And I was just, you know, again, ready to just make this a very efficient visit. And, sorry, my dog is barking.

Cheryl:  37:38

Oh, that’s okay. I can’t hear it. 

Dr. Rebecca:  37:42

Okay, all right. Sorry. It might have to be edited out.

Cheryl:  37:45

No worries.

Dr. Rebecca:  37:46

So, I go into the examination room and as the door opens in the provider comes in, it felt like the air just just deflated. And I started to talk, I said, you know, I’m a physician assistant, these are my symptoms. And she just interrupted me she would not let me speak. And said, “I reviewed everything from primary care and you’re pre-menopausal.” She called me pre-menopausal, which actually is a wrong term to use. I think she meant to say peri-menopausal, but I had just had my hormone levels checked. 

And I literally went to my handy dandy binder and I pulled out the paper and said, “No, no, no, I’m not actually on my hormone levels are normal.” And she refused to accept the papers. And then, you know, incidentally, I had an ovarian cyst that was found like several months before, and she said that no, it’s all because of the ovarian cyst. So, again, I pulled out the paper, “No, I had a CT scan, it was normal,” you know, refused. And she said, “Follow up with gynecology,” I’ve already seen them and said you don’t need any labs and was going to leave. 

And this was all in a matter of, I swear, probably like one minute. And I was just like, oh, my gosh, I thought at least I would be afforded a chance to tell, you know, a concise history give a concise history, and they just didn’t afford me any humanity. Nevermind being, you know, a medical provider you know, and kind of respecting my knowledge. So, that was terrible. So, to make a long story short, very long. I really dug my heels in. 

And when she said no, like, ’cause she was getting ready to walk out the door. And I’m like, “I need labs. I’ve been sick for seven months,” and my spouse was there who said, “No, like, I have to walk her to the bathroom sometimes. Like, she is so sick.” So, she finally gave in in ordered labs only after she realized I was not leaving. I was not. I literally was not leaving. I thought, well, if security has to escort me out, I would learn no more or less about my disease, whatever’s happening to my body right now. So, they finally —

Cheryl:  40:03

Yeah. I just want to — I just want to shout out your tenacity because I feel like I’m such a people pleaser that I really would have just been like, okay, and then like, just cried. So, the fact that you were like so determined, I’m sorry, I’m just shouting you out. But continue.

Dr. Rebecca:  40:20

Yeah, no, I appreciate that. Because, honestly, and I was so fatigued, I don’t even know where I got that energy from, I swear. And I write this in my book that I believe it came from my soul, like, I have no idea how I got the energy. Just, I just kept going down, like, you know, my cards and saying, “No, I need this because of this.” Like, when I told her about the dryness, she said, “Run a humidifier,” but what like, of course you’ve been running your humidifier. Like I can’t, like, my eyes are glued together, and I have these patches all over my skin, you know, pulling on my face that were so obvious, dry patches. 

So, I just went down the list. And I just kept saying, “I need this test because of the symptom. I need this test because of the symptom.” And I just wore it down and I wasn’t combative. I was not rude. I did not elevate my voice. I just simply — and I think that’s important to say because from a patient standpoint, you know, what can you do when you’re being medically gaslit in here. It’s so frustrating, right? You’re so sick. And, you know, it’s easy to kind of fall into this, you know, confrontational manner, which definitely will make things worse. But no, I just stuck to the facts, you know, stuck to the focus, which was I need to walk out here with the paper. And I did, I walked out with a lab paper. And I walked down the hall and got my labs drawn. And a week later, I got a notification from I think it was like LabCorp, you know, patient portal with my results. And I remember I couldn’t work that day; I was too sick. And I remember exactly where I was when I opened up my laptop and pulled up the results. And yes, I mean, my inflammatory markers, you know, platelets, immunoglobulins, my sed rate were all high. But also, these antibodies were found for Sjögren’s. So, the anti-SSA.

Cheryl:  42:06

So, that’s what I was gonna ask us because I know people listening are like, what was the name. What did you ask her for?

Dr. Rebecca:  42:14

So, oh, I asked her for a list of things. But I asked her to — because I asked her for the Sjögren’s antibodies, I asked her for an ANA, I asked her for an anti-double stranded DNA. I asked her for anti-swift proteins, I asked for just a variety of things, you know, ruling out all these different diseases, and especially my uncle actually died from sed 55. And I definitely wanted the ANA. And I know the anti-double stranded DNA, they were so important to me. 

And of course, she left off the ANA off the order. And when I didn’t see it on, when I did not see it on the result, I actually called the laboratory, and they said no, we looked, they actually pulled the order for me, which was so sweet. And they said, “No, it’s not on the order, ma’am.” So, I didn’t have a follow up appointment with this woman, because she told me the test would be normal, no follow up. And she wrote that in all caps on my checkout paperwork, “No follow up.”

Cheryl:  43:15

We need like a museum dedicated to this experience to make everyone walk through it and see these artifacts and see a roleplay. Like, this could be so instructive that this is like one of the — I’m sorry, like, we can’t really compare disease Olympics — but like this is one of the most egregious examples. And I’ve seen it, I’ve seen a lot of examples, but because of the fact of you being such an already well-trained medical provider perspective, like, there is no excuse. Like, that, I get a little bit more like, okay, whatever, there’s no excuse for how you’re treated. This is — I’m like almost speechless, which is like pretty much impossible for me. So, keep going, keep going.

Dr. Rebecca:  43:56

Great. Well, good that you’re seated because I’m not at the —

Cheryl:  43:59

Oh, no! I can’t even believe — what? No. Okay, keep going.

Dr. Rebecca:  44:03

I had no follow up. So, I called the office to say like, she told me nothing can be found on the labs and I have no follow up. And they said, okay, nurse will call you back. 

And the provider herself called me. And I — she just forgot who I was. Okay. Because I said, “Oh, it looks like I have primary Sjögren’s.” And she said, “There’s no way you have this disease.” And I said, “Excuse me—?” Like I, again, was totally, totally shocked. Even though she was, you know, so, so dismissive to me, I still thought like, okay, well, we’re both scientists. And this is data, okay, this is data. And it matches all my symptoms. And she said, “There’s no way you have this disease. Your auto-antibodies are not high enough for me to diagnose it.” And I’m like, “Okay, so do you want me to go to a different lab?” “No, I can just retest it in six months.” I said that’s not — it’s, well, I can’t work right now I’m. 

And anyways, so — and by the way my levels were like four times the normal amount, okay. So, in any event, I, as soon as she hung up the phone on me because she’s like, “I can retest in six months. Call me back in six months,” and hung up. So, I thought oh, my gosh. And I was so bewildered. I actually went online and I said, okay. And I don’t live in a small area, okay. I live in the capital of upstate New York. So, this happened in Albany, New York, so there’s a lot of people that live here. 

So, I went online, and I found out where’s the best place for me to go to get diagnosed. So, the Cleveland Clinic, great for rheumatology; Johns Hopkins. There’s also a Sjögren’s center, University of Pennsylvania. So, I got on a two-month wait for Cleveland Clinic and a three-month wait for the Penn Medicine deployment. 

So, I just had to tighten down and wait for those updates. In the meantime, I saw primary care back who was like, “Well, she doesn’t think you have Sjögren’s. And I’ve never seen anybody with Sjögren’s that, you know, has anything but dry eye, dry mouth.” So, I heard that, you know, I’m realizing wow, like I not only have this disease, that it’s misunderstood, like in the in the general public, but also in the medical community, severely misunderstood.

 So, I ended up at the Cleveland Clinic and I ended up getting diagnosed properly. And a wonderful doctor who was so sweet, and really just said, “You need to get somewhere where they understand the disease because we rheumatologist don’t all understand this.” So, I went to my appointment at the University of Pennsylvania, and I’m still a patient there. So, I just saw him a few months ago. 

Cheryl:  47:01

You shouldn’t have to do this though. This is just — I cannot. I mean, I can believe it because, you know, but I also am, I’m just again practically speechless. I’m glad and, you know, your book isn’t out. I didn’t read it yet. Because this is like for me to learn and, like, so those reaction videos like where people react to, like, ‘Cheryl reacts to medical gaslighting stories’. 

But one of my ideas also for combating this is having like difficult conversations but unnecessary conversations with the providers who did the gaslighting. I wish I could say that I did go back. I think I did have my — this was the gastroenterologist in my case that did the majority of the gaslighting. And then, my parents had to hire a, it was back then called a concierge doctor who also said I was hypervigilant and too anxious and not really sick. But she would, you know, follow up, you know, she would be there available if I had any additional things. But she’s like, stop tracking your symptoms, stop thinking about this so much, you know. 

And so, she definitely knew when I got the diagnosis of rheumatoid. It was what I had bilateral joint pain, not just the one finger and I get that, that’s like the cardinal symptoms for RA for me. So, in your case, there was a lot more objective symptoms a lot earlier. Once I had bilateral joint pain, it was like boom, gone to the rheumatologist. My mom said it was the next day. And then, she diagnosed me the next day. 

So, but back to but back to your story. I never went back to the gastroenterologist and told him that I had RA the whole time. And so, I wish I had done that. I don’t, but I don’t know what it would have done other than, I mean, I do think that providers have to contend with learning. If we never teach the people that gaslit us what our ultimate diagnosis was, then they’ll continue just thinking, you know what I’m saying? Like, have you thought, have you ever done —? I mean, it’s emotional labor on your part, but have you thought about that, or done that, or known anyone who has?

Dr. Rebecca:  49:11

So, you know, the primary care, I did continue to see her until December of 2015. So, I got sick in February and my last visit with her was in December. So, I think it was either before or after I saw the Sjögren’s doctor specialist in Pennsylvania. And I did say to her as soon as right after the Cleveland clinic visit and, you know, I brought, I printed off, you know, the consultation report that said no, she had Sjögren’s. 

And I brought it with me and gave that to her. And she basically said, “Well, I guess you got your diagnosis.” And, you know, honestly and I write about this in my book. This is — I really could have been a total jerk to her. And I probably should have been, okay. But I don’t know, you know, I’m not exactly sure why I didn’t really just tear into her. And I really should have. And in some ways, I guess that’s maybe one of the regrets I have, you know. My spouse says, sign the book and send it to her because yeah, I mean, she gave me some great information, you know, great information for a book. But I think I would love to empower patients to report these things. Report it to, you know, of course, because much of medicine is corporatized. So, you know, report it to someone.

Cheryl:  50:41

There’s a patient satisfaction — patient satisfactions scores mean a lot. So, being able to go talk to Patient Relations is usually what the department’s called. But also risk management, if you think it’s crossed the threshold into a true medical error, you know, being the failure to accurately refer and diagnose, which led to the the progression of your disease.

 That’s what’s so egregious in rheumatology when this happens. Because there’s the data for rheumatoid arthritis, it’s really strong, early, aggressive treatment. That is the way to get this inflammation under control. The longer you wait, it’s like the — my doc, my rheumatologist says it’s like the fire in a house. If you can contain it when it’s just in the front entryway, it’s gonna take really short amount of time. If you can wait till the whole house on fire, it’s gonna take longer. But so, it’s actually doing harm to not diagnose. 

I’m just — but so they said, it’s almost like it became a power, a power struggle, like where you wanted something, they had the power to give it to you, but they’re like, because I had already had a cognitive confirmation bias, like, psychologically that they had already decided that you weren’t really sick. They’re like, well, I’m not going to give in and give you this thing that you want because that means you win. When really, what you’re not trying to do is win a power struggle, you’re trying to get healthy, you know.

Dr. Rebecca:  52:08

Right, exactly. And we all took the oath, right, Hippocratic Oath, you know, to do no harm; first do no harm. And that’s so you can know counterintuitive to what happened. And, you know, honestly, I do believe that it had to be as severe as what it was, though, in order for me to really, you know, take this experience. And I really do, I want to change the way patients are viewed and treated. And I think it just, you know, probably spiritually or something, I don’t know, it had to be this severe in order to really make an impact, and telling others, telling providers, you know, telling these students of medicine that I meet with, you know?

Cheryl:  52:54

Yeah. Yeah. I mean, I think that what I’m curious about is there’s this phrase in, that I learned about in psychology called, like, stereotype threat, where it’s like, when you’re confronted with a stereotype that’s about your people, whether it’s like women or men or whatever, that you kind of — it alters your performance. 

And what I mean about what that relates to in this case would be like, I wonder, psychologically, like what the best angle is. Because when you take a profession, like doctors who are already at all-time highs of burnout, you know, and job satisfaction is low. I know so many doctors who are like, I wouldn’t, I would never, I tell med students don’t pursue this. Like, this is not the profession it used to be. 

Like, my uncle just retired. He’s a pediatrician and amazing, you know, did house calls, like all these wonderful things. Now the system is just so broken. So, it’s like, how do you make a space for them to be like, to feel unthreatened by this idea that they’re — not defensive. That’s the word I was looking for, defensive. Like, I don’t know, what do you think? 

Dr. Rebecca:  54:09

Yeah. You know, and I will tell you, though, that when I do meet with these students, there’s always a few that are kind of like, oh, you know, you can just tell like their faces, you know, as not lecturing to them, like I don’t believe her. But honestly, so between the few, most of them really do, they want to make a difference. And I do put a positive swing on it and say, “You can be the difference.” 

Medicine will change from internal forces and external forces. So, externally from patients saying, like, “I’m not going to deal with the substandard, you know, I’m not going to put up with this substandard treatment,” okay.

 But also internally, so what can providers do? And I usually give them a scenario, this fictitious Mrs. Jones. What if you see Mrs. Jones, you know, she’s not your usual patient, and she’s patient of Dr. X’s. And Dr. X is sick that day. So, you see Mrs. Jones and Mrs. Jones tells you Dr. X isn’t listening. Dr. X, you know, has been blowing off her concerns, and she’s, you know, feels very ill. And he’s making her think, you know, making her think it’s all in her head, you know. So, you see this Mrs. Jones and you feel like, yes, I mean, there is some validity, you know, I have to validate her symptoms, and there is some, you know, data to suggest that we need to move forward with testing or referral or what have you. Are you going to go back to Dr. X, and are you going to say, “Listen, I saw this patient, I saw Mrs. Jones, you know, and she’s been saying X, Y, and Z,” you know, are you going to do that? 

So, I challenge them. And, you know, a lot of times they’re like, whoa. And, you know, I think when I gave a lecture last month, someone said, “Well, it depends on, you know, how long I’ve been out in practice for,” you know, and I said, well, first of all, thank you very much for saying that, that really took a lot of courage to say that. I wouldn’t have said that. That wouldn’t have been my response. Really, I want them to start thinking, okay, are you going to do? What are you going to do? What are you going to do? Are you going to intervene when you find a provider not being empathetic? Or what about lunchroom discussions? I know, I’ve been there. I’ve heard them. You know, this patient says, “I can’t work,” you know, this patient, you know, is malingering, you know, all this. So, what are you going to do? Are you going to try to make a difference from inside? 

Cheryl:  56:31

Yeah, yeah. And that’s important, to get them so early on in their journey as medical students, I think it’s harder a harder sell to the practicing providers. I’m not saying, I’m not trying to be negative, I’m just trying to think, like, what would — and then that’s a conversation for another day, we talked earlier about maybe having a panel of people who are both providers and patients to come together and be like, you know, how can we open people’s minds to this issue in a way that’s not combative?

And that is, like you said, yeah, it starts with the micro-interactions that you have and feeling empowered to sit with the uncertainty, you know, with patients, to say, “We don’t know.” And that’s okay. You know, but I think it’s a tricky one. 

And I do think that, especially if you say, okay, well, I know that my my little vision of a world where hypochondriac is not a diagnosis, that’s not going to happen. So, where do you draw the line if a patient is continuing to feel anxious about their health, and they feel legitimate symptoms of, you know, pain or fatigue, and you as the provider truly feel, that they don’t have any organic, you know, condition going on? How do you separate or differentiate that diagnosis from the, you know, I would argue intrinsically anxiety provoking experience of your body breaking down due to like inflammation or, you know, from a festering but maybe not clinical yet autoimmune illness?

So, it’s tricky. It’s tricky. It starts with sharing the stories, it starts with talking about this, naming it in the open. And also educating patients that this is a phenomenon so that they can be better advocates for themselves. Like, you had to advocate every single step of the way on your diagnosis, you know, and despite it being so severe, I mean, if you couldn’t do your ADLs, activities of daily living, you couldn’t brush your hair, go to the bathroom easily. I mean, that’s so severe. It’s not like you were just saying, “I’m a little tired,” you know? So.

Dr. Rebecca:  58:46

Right, exactly. I mean, I was bedridden at times in 2015. 

Cheryl:  58:53

Ugh, so sorry. Well, I know that people listening might be wondering, so we got the diagnosis, but how is your Sjögren’s treated today? Or how, what treatments — I know we can’t probably go into every single little detail just for times sake. But have you found some treatments that have worked or, you know, what’s in your treatment toolbox in other words?

Dr. Rebecca:  59:15

Sure, you know, and unfortunately, I’m kind of the person who doesn’t really respond very well to regular, you know, traditional medications. So, I’ve taken medications on and off over the years, really rely on a combination of anti-inflammatory kind of, you know, diet, exercise, meditation is huge. You know, I write in my book, I have a sentence that says, “Meditation not medication saved my life in 2015.” And I’ll tell you, it did. 

Because I had this just, I mean, at one point, my sed rate was 70, I might have mentioned. I mean, just this, you know, outrageous inflammation. Just outrageous. And really, I had no medication for it. It was 10 months and I was finally given prescriptions for steroids, and hydroxychloroquine, you know, there’s not one FDA approved medication for Sjögren’s, the systemic symptoms of Sjögren’s. So, there are some in the pipeline and understanding that maybe, you know, another three to five years out at least. So, or there’s two in the pipeline, I should say. 

So, really, just trying to take good care of myself, vitamin supplements, eating, sleep. You know, and again, I have trialed multiple different medications over the years, but nothing regular that I can really tolerate.

Cheryl:  1:00:40

That’s so frustrating that there isn’t, there aren’t more medication options. And that’s why when I do a lot of patient education around rheumatoid arthritis, you know, I try to kind of highlight that, we are, the patient population is, in my opinion, lucky to have access to so many, you know, pharmaceutical options that can be really, really effective. 

And, but so, back to Sjögren’s, in terms of meditation, how did you learn? Like, did you go through a program or?

Dr. Rebecca:  1:01:15

Yeah, you know, interestingly, I, before I got sick, I thought I knew about meditation, but I can tell you, I did not until I was laying on the couch and couldn’t get off the couch because of my physical symptoms. It threw me into this, you know, this kind of concept of like, you need to figure out something here. Like, you’re gonna, like, I really thought it was gonna die. And, I felt like I had to go back to my roots as a chiropractor, you know, so this holisticness. And thank God I had that to go back on, okay, let’s just say that. 

But really, you know, people will say to me, “Well, how did you meditate? Didn’t you like have all these thoughts going through your head?” And yes, I did. But honestly, that was the only thing that actually made me feel better. I was putting myself into a very deep meditative states. And in these meditative states, I was, I feel like I was actually able to just connect with my soul, like the deepest part of me as a human being. And honestly, I would have never been there without this illness. Never. You know, I was really living on autopilot. And I thought that I knew happiness and really, but I wasn’t grateful for things before I got sick. 

So, you know, I feel like it’s been this whole cycle of, you know, just really, just, I learned so many things about myself. So, and I think that’s where the peace comes in, you know, living peacefully amid chronic disease is so difficult, and it’s different for everyone. But for me, it was acceptance, which was really the real journey. It was acceptance. And it was also transformation. So, transforming this to, well, now I can help people. Now I can actually make good out of this. So, you know, there’s some positivity to my suffering, you know. Really, the positivity really outweighs the suffering that I have.

Cheryl:  1:03:20

Well, you’ve touched on my favorite word, which is ‘Acceptance’, which used to be my least favorite word. So, I love that and I think turning — I once heard this phrase, I wish I knew who to give credit to — but turning your pain into your purpose is something that I think, yeah, taking what you’ve been through and making something productive out of it, you know, in your book.

 By the way, I want to make sure to say the name of your book, ‘The Girl on a Gurney’ — ‘Girl on a Gurney: Trading my White Coat for a Hospital Gown’, right? Okay.

Dr. Rebecca:  1:03:48

That’s correct. 

Cheryl:  1:03:49

Yeah, it’s such a great title. And do we have a date when it will be out?

Dr. Rebecca:  1:03:55

No, but if your audience members go to my website, I will be putting updates there and I have a newsletter subscription and I will definitely be sending out updates by the end of next year. And which is really exciting.

Cheryl:  1:04:11

Oh, that’s exciting. Yeah, very exciting. Yeah, and I’m just, I know that your book is going to help some – so many people. Hopefully it will be one of those books that gets recommended in medical schools as well. But yeah, thank you for sharing about the meditation. 

I also, I was always like, I can’t meditate because I am a high energy person. I don’t like to sit still. And learning, okay, wait, it doesn’t just mean sitting still and being peaceful. It means being present with what you’re, whatever you’re feeling. And taking, you know, breathing through whatever you’re feeling. But it’s been really, really helpful for me as well. So, for anyone who’s skeptical about meditation, maybe after hearing that you might want to give it a try. 

Dr. Rebecca:  1:04:53

Yeah, excellent. Absolutely. And really, you know, being mindful, right. So, it could just be going to your cupboard. And taking out your favorite spice and just kind of, you know, just sniffing the aroma and how does that make you feel? And really, you know, it’s, again, it’s different for every person. But really, these healing meditations that I still do every day really just are so powerful.

Cheryl:  1:05:22

Do you have any recommendations of like books or websites so that people can learn more about meditation and mindfulness?

Dr. Rebecca:  1:05:30

You know, here’s the thing. And, again, people ask me this, and I kind of just, like really, just, truthfully, once I quieted my mind down, I was just able to just visualize and just — I do, and I don’t do any guided meditations, really, you know, once in a while I do, but mostly I just do self-guided. 

But I do want to say ‘The Power of Now’ by Eckhart Tolle. Oh, you know, right. So, you have to know his quote about acceptance of the unacceptable is the greatest source of grace in this world. 

Cheryl:  1:06:04

Yeah, yes. Oh, wow.

Dr. Rebecca:  1:06:07

He talks a lot about meditation and just really just staying in the moment.

Cheryl:  1:06:11

Mm-hmm. That’s, yeah, a lot of people that are in my Rheum to THRIVE groups also swear by, like, either the if you need more guidance, like the Headspace app, or Insight Timer, those come up a lot. as recommended, like, guided. I like to have guided personally because my mind wanders a lot. If I don’t have guided at this stage. Maybe in the future, I’ll be better at self-guided.

Dr. Rebecca:  1:06:38

I know, I was talking to a friend of mine not that long ago. And she’s like, “You really don’t do guided meditation?” It took a lot of practice, believe me. A lot. But when you’re laying there, and you can’t really do anything, then you kind of have time to —

Cheryl:  1:06:57

Yeah. Yeah, I have, we have a couple of rapid-fire questions before we wrap it up. You know, one of mine, I wanted just to add this one in, I think you’ve kind of — I mean, I don’t even know what the answer to this for you would be. But if you were, if you were having these symptoms that you had before you got diagnosed today, what would you do differently?

Dr. Rebecca:  1:07:20

So, I will say that I did have some self-doubts here and there, okay. Because I think part of that was also a little bit of the manipulation from, you know, my primary care provider who was telling me, “You need to take this antidepressant, you need to go on vacation,” you know?

So what I did was, when I had my worst symptoms, then I would go get labs, and obviously, the labs would be, they would correlate to my symptoms. So, yes, okay, my sed rate was 60. And, you know, I feel terrible, or if I felt a little better during certain times, and yes, okay, now my sed rate is 45. So, I think that’s self-doubt. So, I would limit eliminate that. You know, and again, I didn’t have a lot of it, but honestly, even, you know, just to really, you know, not have had to run and get labs just to kind of prove to myself objectively. No, listen, this is the data.

Cheryl:  1:08:18

Yeah, yeah. I mean, yeah, that makes a lot of sense. Do you have any words of wisdom for newly diagnosed patients either with Sjögren’s or a similar condition?

Dr. Rebecca:  1:08:31

Sure, you know, I think really release the expectations of what you think your life, you know, what you projected your life to look like. And that was huge for me. And I actually when I lecture to the students of medicine, too, I tell them, like, what you picture your life to be, it may end up being very different just like mine. 

So, yes, so I would say to newly diagnosed patients, you know, really don’t compare yourself to others. Really release the expectations and know that there is going to be a learning curve until you find that balance, okay, of what you, you know, what you can do with your routine. And there may be times when that balance is definitely changed depending on flares and just being, I guess, you know, acceptance of the unacceptable and, really, the uncertainty.

Cheryl:  1:09:26

Yeah. Oh, man, you’re hitting on my —

Dr. Rebecca:  1:09:29

It’s so hard. 

Cheryl:  1:09:30

Yeah, it’s so hard. And when I think, when you say, “Release expectations of what you predicted your life to look like,” I would say that reminds me of this concept of what is a normal life. Because a lot of people say they’re trying to be comforting to patients, and they’ll say, “Oh, well, you can —” let’s say, with rheumatoid arthritis where there’s all these good treatments, “You can live a totally normal life with rheumatoid arthritis now.” 

Like, that’s how they define what hope is, is like basically living a life indistinguishable from someone with a chronic illness. But in a way, that’s kind of like a form of subtle ableism, right? Because you’re saying like a life without chronic illness is like the norm, that’s normal. And that’s what I want, right? And that’s the best life to have, you know?  

Versus, you know, saying, like disability is the only — what do they call it — disability is the only minority group that anyone could be part of it in a time. Like, your life could change in an instant, nothing will protect you from it. Like, no amount of good eating, exercise, meditating, it can happen to you at any time. One cell in your body could decide to go rogue and, you know, so, sorry, that’s my little soapbox. But saying that, you know, that doesn’t mean your life is over if you have chronic illness.

Dr. Rebecca:  1:10:47

Right, exactly. And I just want to also say, you know, having a medical degree also, that’s not going to protect you either. This white coat is not going to protect. But no, absolutely, it is. It’s so, really, it’s hard. And you have to find, you know, kind of your individual piece. 

And, you know, according to the CDC, over 60% of all US adult Americans have at least one chronic illness. At least one. So, we really do need to reimagine chronic disease and disability in this country. We do. And it starts with society. It starts with really a respect for everyone. So, everyone needs to be treated in an equitable manner, right? Everybody needs to be treated equally. That’s where is starts. 

Cheryl:  1:11:37

Yeah, a hundred percent. On a different note, what is something that’s bringing you joy right now? Doesn’t have to be related to like Sjögren’s or anything, like literally anything.

Dr. Rebecca:  1:11:49

You know, what’s bringing me joy is really knowing that I have taken this difficulty and I really have made it into a triumph and really helping others, you know, makes it a blessing. And I really feel like if I can just help one other person just avoid the suffering, that extra suffering that I had through medical gaslighting, you know, really, it’s just all worth it.

Cheryl:  1:12:19

I feel like if I could give you a handle on Instagram, it’d be like ‘Anti-Gaslighting Crusader’.

Dr. Rebecca:  1:12:28

I love it. 

Cheryl:  1:12:29

Well, little social media advice on the side here. Okay, yeah, let’s look it up right now when we’re done. Okay, what is it — I love that. I love that. And what does it mean to you, last one, to live a good life and thrive with rheumatic disease? I think Sjögren’s falls under that umbrella of inflammatory autoimmune, you know, immune rheumatic disease.

Dr. Rebecca:  1:12:51

Exactly. And I think just finding the good in the little things, you know, just living a life of gratitude, which, and, you know, again, I want to say I was not a total jerk before I got sick, but honestly, I had no, I just had no clue. Like, I just was just on this automatic pilot, and really just being grateful, like, okay, like,I was able to get a shower by myself. And I’m just so grateful for all the things I am able to do. And really just finding the little things, you know, just honestly, just finding the little things in everyday life.

Cheryl:  1:13:27

So, so true. You really don’t appreciate those until they’re taken, till the ability to move through the world with ease is taken away from you. So, I love that. I hope, I think that’s good advice to anyone listening. 

And I’m gonna put all these links in the show notes, which are on my website, or if you’re watching this on YouTube, and also there. But, you know, to your website and your YouTube channel and everything. But where can people find you? Where do you want them to go?

Dr. Rebecca:  1:14:02

Sure, I think my website www.rebeccahosey.com. It’s probably the best way. Then there’s links to my social media pages that way. And also, I have articles that are on there and other media, webinars, other things that they can watch, and listen to, and read.

Cheryl:  1:14:28

That’s so, so great. I really hope that this, you know, I think that there has been an upswell, if that’s the right word of awareness, of medical gaslighting in the last, you know, few years and with long COVID and the increase in incidence of autoimmune conditions. I’m hoping that there is even more and better understanding of this phenomenon so that we can make it reduce in frequency. 

So, thank you for everything that you’re doing to help others not have to go through what you did. Because that was, like I said, I’m not playing, you know, I’m not trying to say, like, you know, everyone’s experience is horrible if they’ve been medical gaslighted, but I — yeah, the degree to which you were explicitly told, like, “I will not help you because you’re not sick,” is just ridiculous. 

So, I’m just, if I were you I’d be like, I’m never talking about this again, it’s so stressful. So, thank you for taking on the emotional labor, you know, it takes time, you’re taking time out of your day to share this with me and you’re taking time to share it with the medical students and with your books. So, I appreciate it. I’m getting stress, I’m feeling my armpits sweating thinking about your story. I’m so frustrated for you. So, I can’t imagine what you’re feeling, like, reliving it, you know?

Dr. Rebecca:  1:15:55

Well, thank you for that validation. I appreciate that. 

Cheryl:  1:15:58

Yeah, yeah. Oh, my gosh, no problem. And I’m really, I’m working on — I got this comment on my YouTube channel that like I’m — or I interrupt people too much. So, I apologize. I just, I had to a few times be like, ugh, I can’t believe this happened to you. I cannot believe it. 

So, again, thank you again, and hopefully we’ll catch up soon. And if everyone could check out, again, ‘Girl on a Gurney’, or rebeccahosey.com is the website, right. I’m looking down on my notes. Yep. Rebecca — C-C-A-H-O-S-E-Y — .com. Okay. Bye-bye for now.

Dr. Rebecca:  1:16:36

Thank you. Thank you for having me. Bye.