Living Indomitably
with Beth McKee
Behavior Bites Podcast - Ep71 & 72September 24, 2025 & October 8, 2025How can you add more curiosity to your world?
Can you shift your perspective to be more reflective rather than reactive?
In this 2-part feast— I speak with a behavior analyst about leadership, her journey with chronic illness, using our science to connect the data points to a diagnosis, and enjoying a meal more when sharing it with loved ones.
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Amuse-Bouche
What does leadership mean to you?
Appetizer
How did you get into Behavior Analysis?
What was the process for you discovering you have Ehlers-Danlos syndrome (EDS)?
Palate Cleanser
Describe the best meal you’ve had while traveling.
Entree
Who are your role models and biggest inspirations?
Dessert
Describe one of your biggest wins.
Excerpts from the Episode
(*Paraphrased highlights)-
Leadership to me at this point is more observation of others and looking at what's going on in whatever context that is and doing a quick assessment. I always fall back to the science. You go in, you want to assess, see what's happening. Learn from others what their needs are, further assessment, and moving on from there.
Once I have an idea of what people's needs are, then my work is on building strategies for problem solving, but more handing that over to the people who are in there doing things.
So it's sitting back, observing, listening, and helping to facilitate. That's leadership to me. It's really different from what I thought leadership was earlier on in my career. I couldn't be any more different in terms of how I take on that role now in comparison to where I was when I started.
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I was diagnosed with a connective tissue disorder called hypermobile Ehlers-Danlos later in life. When I was a child, I had gastrointestinal issues and I would have dislocations in my knees. I also had bladder and kidney infections, fatigue, and headaches. I remember having GI studies when I was eight, nine years old, testing on my bladder and my kidneys, blood tests, and everything would come back normal.
As I got older and went into college, the headaches turned into migraines and I was having cyclical vomiting episodes and partial dislocations. As I progressed into my thirties, I started having real problems with what I now know as neuropathy, which is pain in my extremities. They would burn and tingle really badly. I was diagnosed with small fiber neuropathy. That was the first thing that I was actually truly diagnosed with. I think that was when I was in my forties.
During all of this time, I'm getting different testing as things happen and they would always come back unremarkable; idiopathic. I heard idiopathic over and over and over again. It was so frustrating, unremarkable, idiopathic, meaning we have no idea what is causing whatever is happening and we don't even have a name.
I really wasn't getting any treatment until I was diagnosed with small fiber neuropathy, and the neurologist said to me, small fiber neuropathy is a symptom of something. It doesn't exist on its own. It is the result of some larger issue, but the answer was we don't know. You don't have any of the normal things that would cause small fiber neuropathy. I also got a diagnosis of fibromyalgia at that point. So that was really tough.
I just kept digging and digging and digging. Somebody had talked to me about POTS. So I would Google “small fiber neuropathy”, and I would put my other symptoms in, and one time, I added POTS and something came up about this Ehlers-Danlos. It was in the middle of the night and I was on my laptop in bed and I see this page of symptoms. I come across the 2017 criteria diagnosis for hypermobile Ehlers-Danlos. When I am reading this, it was like I was reading a story about my life, my health. It literally described me. I woke my husband up and I said, I found it. I think I finally found it. He looked at it and he said, oh my God, that's you. That's you.
I ended up going to Mayo Clinic where there's a center for Ehlers-Danlos. The doctor who runs that clinic was the one to diagnose me. For hypermobile EDS, there is no genetic marker. It is just a clinical diagnosis, meaning the doctor looks at the criteria and looks at the patient. You either rule in or rule out. That's why nothing was coming up on all of those tests, because connective tissue disorders, they're not going to show on the kinds of tests that we have. So that is how I ended up with the diagnosis of hypermobile Ehlers-Danlos.
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So the best meal, I'm going to just say recently, ironically is not about the food. It's about what state I was in going into that meal. I live in a different state than my family and friends. So traveling to Massachusetts and having a meal in Boston with family and childhood and adult friends.
It was a fantastic meal because I was hungry, but it wasn't just the hunger for food— the oysters, steak, asparagus, chocolate dessert, coffee, and martinis. It was hunger for community. Being at that table with people that I really love and adore, it just filled me up.
ABOUT Beth
Beth McKee, MSEd, BCBA
Beth is a Board Certified Behavior Analyst. She works internationally supporting sustainable humane practices in behavior analysis and contextual science. She has over 25 years experience in the field. Beth has appeared nationally and internationally on live online trainings and a podcast. She has presented in the US and China. Beth is committed to life long learning & facilitating societal change through the humane application of the science of human behavior.
CONNECT with Beth
Instagram: @bethm_mckeeEmail: bethmariemckee@gmail.comRESOURCES
my.clevelandclinic.org/health/diagnostics/24169-beighton-scoreehlers-danlos.comAre You Mad at Me?bendybodiespodcast.com/guests/jessica-ecclesjeanniedibon.comPlease support our podcast by leaving a rating or review!
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