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In this episode, Laurel and Sarah are joined by Nikki Naab-Levy, strength coach and hypermobility specialist.
You will learn:
- What is hypermobility and how does it differ from flexibility
- What are the Ehlers-Danlos Syndromes and how do they differ from Hypermobility Spectrum Disorder
- Who can and can’t diagnose hypermobility
- Whether hypermobile people should never lock out their joints
- What are the most important considerations when working with hypermobile clients
- The negative consequences of catastrophizing positions as safe or unsafe
- Why social media focuses on the wrong issues for hypermobile people
- Strategies for hypermobile people to sense what level of activity they should undertake on any given day
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I found your podcast after I finished listening to Linker’s Slouch, and encountered this along the way and decided to check it out first, as I have HSD/EDS. And I’m glad I did because it gave me a sense of the quality of information I can expect from yous twos.
The only part I struggled with was the discussion about getting fused with thoughts about movement and it’s consequences. Kinesiophobia is real, and I struggled with it years ago, briefly, but after a certain point you get enough documentation and pretty much are able to distinguish between real knowledge and fearful knowledge. Unfortunately no matter what kind of wrapping you put around it, challenging someone who has developed post-exertional malaise (PEM) and/or exercise intolerance (EI) from years of HSD/EDS (or other fatiguing illnesses like CFS/ME, Long Covid), usually devolves to what Susan Sontag in her seminal classic, Illnesses As Metaphor, called victim blaming. Yous twos–or yous threes in this case–obviously didn’t do it intentionally, but you DID do it. I wouldn’t spend a second worrying about it beyond what it takes to prevent doing it again, because it’s such a common and easy mistake to make, and one I’ve made not only about myself in moments of self medical gas lighting, but also in moments of weakness when I’ve, as Sontag would say, psychologized symptoms of others with complex and/or chronic illnesses, including those times I’ve even done it to those with the HSD/EDS and their other common co-occurring conditions, e.g., mast cell activation syndrome, postural orthopedic tachycardia syndrome and/or other forms of dysautonomia, and PEM, all of which I also have.
It’s true that I don’t know for a fact that if I walk around the house for 5 minutes that it’s going to cause a 24 hr. PEM crash, like it did the last 10 times I walked around the house for five minutes, and help me decide whether or not I should still try and walk around the house for five minutes–or whether or not I should have tried it after nine times, or if I should try it after the 11th time? What if I tried it 20 times and crashed 24 hrs. every time? How about 30 times? 40? 50? 100!? At some point I just have to trust my intuition. But consider the fact that even a 10 try sample is going to take at least 20 days: one day to try it and one day to recover. And that’s just for walking around the house for 5 minutes! There are other things I’d like to do with my life. Like read. I used to read voraciously, but now I have to ask myself what it’s going to cost me (sometimes just five minutes of reading can knock me out for 12 hours). I long ago abandoned trying to figure out whether or not that is, as yous twos put it, a psychological versus physiological problem. It creates too much of a slippery slope back to metaphorizing, psychologizing, gaslighting etc… and all the other horrible victim blaming tortures we or others have put ourselves through in the name of “just trying help.”
Which reminds me, did you cover Spoon Theory, or what my wife and I call Bullet Theory? It’s barely adequate, but it’s really the only metric victims of PEM have at this point, at least the only one that works on both observational and pragmatic levels. Maybe it would warrant an episode of its own?
Another episode I would really like to hear yous twos do is one on scoliosis. I’d especially like to hear you cross reference it with the citations and discussions of posture panic you cover in the second episode of the series of the same name. I, as many folks with HSD/EDS do, are also victims of painful scoliosis. In my mind it would have to be an exception to the type of “bad” posture that DOES cause pain, if you follow what I’m saying. Or maybe scoliosis and posture aren’t even of the same phenomenal domain? Perhaps I’m getting ahead of myself for I still haven’t finished part two of the posture panic series, nor have I began the one on alignment dogma, which I presume covers similar territory.
Just to be clear, I totally agree with yous twos, Linker, et al about posture fascism and alignment Nazis and all that BS. I’m only pointing out here how my chronic illnesses and scoliosis call for complex, innuendo sensitive and perhaps even paradoxical accepting level of investigation and analysish, lest we create even more dogmas in the process of trying to get rid of old ones, or continue to engage in victim blaming without even knowing it.