Bringing Visibility to Invisible Illnesses | Episode 35
===
Kara Wada, MD: Good morning, everyone.
Welcome back to the Crunchy Allergist Podcast.
My name is Dr. Kara Wada, and I am so excited to share with you a version of the presentation I was so honored to give at the third annual physician coaching summit. This past week.
As those of you may or may not know over this past year, I became certified as a life coach through the life coach school.
In large part because I found the tools of coaching so critical to my own recovery from burnout, both professionally and personally.
Seeing a group of physician coaches come together and see how they are applying these neuroscience-based tools in changing the world was incredibly inspiring.
I'm excited to continue to see how we all evolve and grow and change over the next year.
To see where we are at the fourth annual summit next
I was honored to share my presentation, bringing visibility to invisible illness medical gaslighting through coaching.
I am going to adjust it just a little bit, because I know all of you that are listening are not all physicians.
But I would like for you to consider stepping into a physician's shoes for a little bit.
And for those of you that are healthcare professionals, part of this presentation, we'll also have you stepping into the role of patient, if you aren't already.
As anyone who works in academic medicine knows, you are required to start out your presentations with a disclosure slide.
This allows folks to understand where your biases may be and in particular, in academics and research, ensuring that we are accounting for biases as it comes to money.
This is in part the sunshine act.
So if you're not aware, you can actually look up your physicians online on a database to see if they really are the stooges of big pharma or not.
So checking my own biases...
I am a white CIS heterosexual, married mom of three.
My children are ages 10 months, four and seven.
I am a proud elder millennial and I should add a huge fan of Hanson.
Hope you don't hold that against me.
I come from a very squarely middle-class Midwestern background from the not Chicago part of Illinois.
So I lovingly referred to our state, which is essentially two states culturally.
I am privileged enough to have good health insurance.
I'm highly educated. I'm a Physician.
I have training and I'm boarded in internal medicine and pediatrics and allergy immunology and lifestyle medicine.
I also have done advanced training and medical education and obtained my life coach certification through the life coach school this past spring.
I was a physician before I was a patient.
I was diagnosed with systemic Sjogrens in 2019.
But really in hindsight and with a lot of thought and contemplation, I really was probably experiencing symptoms as early as 2005, 2006, back in college and medical school.
But as a driven young woman with my eye always on the prize.
Going to medical school, coming up physician to getting married, to having kids. I had my blinders on and I really had never learned or been encouraged to listen to my body.
It was in may of 2019, you can see me here holding my then infant daughter Josephine that I was diagnosed with Sjogren's and Josie was diagnosed with an egg allergy after she had anaphylaxis to some scrambled eggs one Saturday morning.
It was at this point that everything in my life seemed to come to a screeching halt.
I really had this realization that we had been living life at full speed ahead. That was to the detriment of our health of, you know, my own and my family's health.
I think for so long, I had this misperception and this false belief that my education, especially being highly educated in the immune system that that was somehow protective.
Protective from these catastrophic diagnoses that now we were subject to and labeled with.
So like any good type a human.
I doubled down and tried to do all the things perfectly. My diet. My exercise, really getting those huge outputs on my Peloton.
Getting the superfood supplement to have the green smoothies to nourish my body and I ended up with acute liver failure.
Which ended up being attributed to that said superfood supplement.
So again, you know, doubling down thinking that doing everything perfect is going to make everything right.
I embarked on the deep dive into the wellness and support groups and everything.
I learned a whole lot along the way, and then decided it was my mission to use all of this to share my story with the world.
So one of the things that I have loved the absolute most about being a physician are my relationships with patients.
The physician patient relationship is complex and it has evolved.
But I think when we think about that ideal relationship between someone who is suffering and someone who is called to heal, we tend to have a similar idea of what that ideal should look like.
It should encompass a shared system.
In regards to how we view health and in some ways to be effective.
It needs to encompass compassion.
Being present in that moment with that other human being and having a mutual respect for one another.
It needs to be a trusting and confidential. Relationship with honesty and integrity.
Used to be affordable.
There needs to be that je ne sais quoi.
That personal chemistry between these two human beings to really be that spark in that ideal relationship.
Between suffering and healer.
There needs to be an element of confidence but with humility that you can help that person heal but also understand your limits.
I think we could all agree though, that the physician patient relationship has not really ever looked this ideal for most people on the planet.
Think back even hundreds of years.
We've seen the evolution of numerous social movements.
Those have impacted our relationships in the exam room as well.
We think about marginalized groups, including our African-American communities. Female identifying communities. Our LGBTQ plus communities.
All of these marginalized communities have seen evolution of their freedoms, rites, and empowerment over the last several hundred years.
We are seeing this parallel in how we show up in the exam room was patients from a time when Henrietta Lacks went to see her physicians for some symptoms she was experiencing.
She went on to be diagnosed with cervical cancer and her cells were taken from her body without consent.
And continue to be used without any compensation by researchers across the globe.
To the evolution of the patient's bill of rights.
And now what we're seeing in patient empowerment.
We also have seen an evolution of the role and perception of physicians.
Going from this God like stature to maybe being viewed more as a superhero.
I would preface that really, we need to be seen as the human beings that we are human beings. All of us have experienced trauma.
None of us escapes the human condition without experiencing some circumstances as trauma.
The big factor that can mitigate that trauma to make that trauma better is human to human connection.
Unfortunately what we see in particular in the American healthcare system is the emergence of many outside forces that are trying to interrupts, interjects into that physician, patient relationship.
From your insurance company, dictating what medications you must try when and where. To the things we know big pharma is doing. To the electronic medical records requiring doctors to do their charting to in order to be paid.
Not wanting to take that home, right, so we ended up typing while we're in the office.
Taking away from that human to human eye to eye connection.
We also see many big venture capital owned entities buying up medicine.
We also see the emergence of social media and influencers.
What's a sad commentary is so many of us will spend more time interacting with our favorite influencers on tech talk or Instagram or Facebook than we will with our own primary care physicians.
So we get that face-to-face time to know, to like know and trust them and that changes that dynamic.
So I want everyone listening whether you are a patient or a physician or nurse or whomever to take a walk in one of my patients shoes.
Of course, Jenny is not really Jenny. And this is actually just a amalgam of many patients that I've seen.
But Jenny is a 28 year old female and for seven years, she's had a history of recurrent sinus and ear infections.
It's just now that she is being found to have a low immunoglobulin or IgG level.
So for those who are not in the healthcare professions, this would, to me mean that Jenny has an immune deficiency.
There's a reason why she has had these recurrent sinus and ear infections.
And I would like you just to take a minute to imagine jenny's experiences up to this point.
The interactions Jenny has had with her family and friends.
"You're sick again. Why are you canceling on us? You're so unreliable."
Those interactions Jenny has had with her medical team.
The interactions that the urgent care or the minute clinic, trying to get antibiotics for a sinus infection that she knows needs treatment. But her team has been told antibiotic stewardship we need to not treat every cold with antibiotics, right?
Or the fact that she's been having these symptoms since she was 21, when she was in college, she was getting care at the healthcare center at her college and then she transitioned.
She graduated. She moved into her first job with pretty piss-poor coverage. And now is getting care intermittently.
She avoids care because she has a high deductible.
She's off of her parents' insurance, all these things that evolve and change over time, she's moved.
She sought support from online support groups.
Groups that many times can have amazing support and reassurance.
But also have their own pitfalls of misinformation and negative stories, horror stories that can emerge in the support groups.
For those of you who are not immersed in the chronic illness community, I want to share the language of empowered patients.
Language that it took me being on the other side of the coin to learn and to use and to continue to grow in my understanding of.
*One is, what is an invisible illness or disability? *
This is any illness or condition that doesn't have outward or visible signs or symptoms.
Most people who will look at me will see, you know, in my videos of my recent Dr. America competition or giving talks that I look like a normal 38 year old female for the most part, I may always have my glass of water for my dry mouth.
But by anyone just looking at me at the surface. I look quote unquote normal.
that may vary based on the day. Based on the time of day.
My energy may crash at the end of the day or after lunch if I haven't done a good job of pacing myself or nourishing my body with the food and hydration.
That's different for each and every one of us.
Invisible illnesses encompass not only autoimmune conditions, but also mental health conditions. Neurologic differences. So on and so forth.
*Another term that is really important to be familiar with and understand is ableism. *
Abelism is discrimination and social prejudice against people with disabilities and or people who are perceived to be disabled.
Many of us, especially those of us who are new to living and embodying a body that is chronically ill have internalized ableism.
These internalized beliefs that we are not perfect and whole exactly as we are.
And this is something I continue to work on, almost every day.
Another word that you were going to be hearing more and more in popular culture, especially as it's featured on Dr. Phil this week and has been featured in articles in the New York times and other large media sources is *medical gaslighting. *
This is the term that is used to describe.
When patients have felt that their symptoms were arbitrarily dismissed.
As in insignificant or labeled a psychological or attributed to their weight or their a lack of self care by healthcare professionals.
It's not being Seen. Heard. Or believed in that setting between healer and someone who is suffering.
And that is a trauma and its own.
So, if you are just listening to this podcast, I have also recorded the screen recorded by slides.
You can check that out on our website, but I want to share this tweet from @kindnessroast.
And it's doctors and medical dramas when a patient has a mystery illness quote, "I must examine every symptom and run every test.
I won't rest until I've cracked this case."
Doctors are in real life when a patient has a mystery illness.
"Hmm. Have you considered that you're faking it."
And sadly, this happens all too often.
We all know if you are of my age or around my age watching house or Grey's anatomy, not only is it totally unbelievable.
In that an internist is never going to be doing a surgery, but.
There are endless resources for these imaginary physicians too.
Stay curious and continue to dig and not to rest until an answer is found.
But this unfortunately, rarely seems to happen in real life.
Your labs are normal. But you don't feel normal.
So the question comes in is where does coaching come in?
How can we use coaching to be a solution to medical gaslighting?
And I see that both sides of this relationship.
Coaching can be integral as a chronic illness patient and helping us understand the stories we tell ourselves about our illness.
Coaching can be critical in empowering us to say what we need to say and communicate our needs to our loved ones, to our healthcare professionals, and to ourselves.
It can empower us to set boundaries with our friends and family and our healthcare professionals.
I think what's been most critical in my health and healing is using coaching to develop self-compassion and realizing that self care is far from selfish.
It is required.
Help us grapple with our internalized ableism and sometimes we do need the addition of things like therapy to deal with some of the adverse childhood events or trauma we've dealt with.
But coaching has kind of this forward focus that can help supplement understanding and dealing with the past that is accomplished more often in therapy.
I think the other aspect to coaching that I've seen be so powerful, both personally, and with my coaching clients, is learning to deal with the time and energy scarcity we feel in the setting of chronic pain and fatigue that we deal with.
Chronic pain and fatigue are the circumstances were dealt with.
How can we use our thoughts, our feelings, our actions, to get the results we want in spite of those circumstances?
Now if you are listening and you are a chronic illness I want you to take a walk in your physician shoes.
Recent stat came out that 62% physicians are burnt out.
This is just physicians, certainly our nurses, our medical assistants, everyone in healthcare is stretched beyond their 10 solid strength.
What we know about burnout is that it puts us in this place where we are unable to be our empathetic selves.
We have compassion fatigue. We're unable to tap into that caring that brought us to medicine.
We have trouble with depersonalizing just to deal with the stress and the trauma.
We become cynical and this can lead to increased medical mistakes, increased mistakes in how we think our brains when they are under the stress and in this trauma.
Default to the fast mode of thinking.
It's a way to conserve energy.
It's a survival mechanism and that changes how we think.
It makes it harder for us to work well as a team and as healthcare professionals.
Our health suffers along with this.
And after three years of a pandemic, a increase in distrust in the medical system.
Many times for very valid reasons, being ignored, not having our symptoms validated.
But It's it's really put a strain on these interactions.
We already talked about all of those outside forces, too. Right?
We're not able to have control in our medical decision-making without third parties having their say.
We aren't able to set the amount of time we need to have with our patients to have those meaningful relationships.
Let alone actually check all the boxes are expected to check during particular visits.
We aren't practicing the kind of medicine we signed up for when we devoted a minimum of seven years of our lives between medical school and our residency training.
And the hundreds of thousands of dollars, we went into debt for.
You know, sacrificing for most of us are twenties.
Delaying having babies to laying our own needs, whether it's going to the bathroom or feeding ourselves or not sleeping for 30 hours in a row.
And I don't say that to say, well, is me pity me.
But I think it's important to understand both sides of this relationship to really make a difference in medical gaslighting, and to understand how we can affect change systematically.
So coaching for physicians is an evidence based tool that we have very good data and increased amounts of data, telling us that this is a way that we can improve burnout.
We can learn to set boundaries with our staff, with our administrators, with our patients too.
And I'll talk about how that can look to step into our own power in these larger systems and to ask for what we want.
Which for most of us is more honored experience of what we expected when we submitted those applications to medical school.
We need ways to deal with the trauma that we experience when we are dealing with human beings and lives.
The trauma we experienced firsthand and seeing the suffering of our patients.
But also vicariously through them as well.
Those are equal in their magnitude that they affect us.
So for those who are practicing, I have some tips and tools that I love to share and then I am going to share next steps if you are patient tuning in or a caregiver or advocate on how you can learn the tips that I share with them as well.
So, this is what I shared with my physician colleagues.
*We need to actively listen. *
We can never fully walk in another human shoes.
But we can hold space and we can let them know that they've been heard. Even if, and especially if we can't explain their circumstances fully.
Human connection is one of the solutions or mitigating factors to trauma.
Elevation is huge.
This is why chronic illness patients search high and low and go to so many of us docs for a diagnosis.
Because validation being seen, heard, and believed is a path forward.
The human brain hates uncertainty and not having a name is being perpetually stuck in that state of uncertainty.
*We also can set boundaries. *
And by setting boundaries, I think this really focuses on just being clear about expectations.
So many times what you will hear from other chronic illness patients or even from doctors on both sides of the the conversation relate back to not having the same understanding of what this interaction will look like.
I recommend letting patients know the length of their appointment.
So they have an idea of about how much time they may have with their doc.
As a physician, are you able or willing to block additional time if you have someone who may need it?
If so, how can this and how has communication going to look between visits?
How are you going to communicate about test results? Does this require a visit? Is this a portal message? Is this a call with a nurse? How does that look? And what should you expect?
Because having those ground rules or having those boundaries is a way to help us feel more safe.
And being true to our word is a way to be not only trauma informed, but a trauma responsive system.
*We also need to be willing to rethink. *
Psychologist, Adam Grant has a whole book on this and it's a great book.
It's called Think Again.
But he really advocates for us to stay humble.
To maintain a healthy sense of skepticism.
And approach the world with curiosity.
When we lean into curiosity, we are fully using what is human about our brains?
And we are acknowledging that despite the fact that we know more now than we ever have known about the human body and physiology but our work is not done.
We continue to discover and to think that we have it all figured out is being pretty prideful and a whole lot of hubris.
*It's also important to remember that it's okay to not have all the answers. *
We can recommend other sources like valid websites.
We can be open-minded sympathetic. We can share our biases.
I share with patients all the time that I am a little bit biased against supplements given my issues with them causing me to have a liver biopsy. Right.
I still use some, but you know, I have a very healthy respect for them.
That informs my recommendations.
Because I can't separate how I see the world with out being informed by those experiences.
We need to be open about the alternatives that our patients have.
Inform them of those alternatives.
I think it's important to remember that we can always *work towards progress *and try our best to avoid the pitfalls of working towards perfection.
Dr. Phil this week is doing an entire episode on medical gaslighting.
This is an incredible opportunity for so many more people to learn.
This language to hear the stories of those who have suffered now in full honesty is this the perfect exact forum that I would choose in a perfect world to share this message.
Maybe not.
Dr. Phil show has had its controversy. Right.
But it is progress over perfection. I have been incredibly honored to share this platform of bringing visibility to invisible illnesses through the doctor America pageant.
And although I did not win the crown this I was first runner up, which I'm super excited and proud of and so excited for Dr. Haley. Rain as Dr. America and she'll be on the podcast soon, but it is progress over perfection.
A couple of weeks ago too may or may not know.
I had the honor of gracing, the TEDx stage in DeSoto, Texas.
There I was able to share my three strategies.
For a successful medical appointment and so in the coming weeks, I will be sharing those on another episode of the podcast.
But I also would love, love, love to get the word out about how we can empower ourselves as patients and as physicians or healthcare professionals to take back the human to human connection and really help it emerge to the vision of what it should be.
The ideal of a trusting sacred relationship between someone who is suffering and someone who is called to ease that suffering.
So if you are excited about that mission, as excited about that mission as I am, I would love, love, love to have your help and support when my TEDx Talk or Ted Talk goes live on the main Ted website.
So the main Ted website and YouTube channel is where all of the edited refined TEDx videos are housed, and this is an enormous opportunity for me to share this message on a global scale.
But we need more eyes and ears and voices to share this vision with the world.
So I am gathering the team to help get this message out. And I am excited to be able to reward everyone who participates with both some monetary prizes from me and also we'll be doing some coaching sessions as well.
All you have to do is hop over to the www.drkarawada.com website.
crunchyallergist.com still works too.
It routes you back over to there.
And sign up to be part of our Ted talk launch team.
We will be sending out emails as soon as we hear the word that it's going to go live and we will ask for your support in posting and sharing and texting and tweeting.
We'll have some sample wordings, so it will be super easy peasy.
And I will thank you so, so much for your help and support.
The other way you can get this word out is to share this episode to hop over to apple podcasts to leave us a five star review and to share this episode with five of your colleagues or friends.
So that we can share this message with the the patient and physician that healer and suffering that human to human connection can heal in part the trauma we have all been experiencing and try to be the change that we so desperately need in this world. I thank you so much for tuning in.
I look forward to talking to you again next week.
And I look forward to hearing your feedback about this episode.
Thank you so much for your time, your energy and your spirit and talk soon.
