Holistic Health and hEDS

The Ehlers Danlos syndromes mean different things to different people. If you ask what it is, the answer varies depending on perspective. Each one of my patients has their own experience with EDS, some more all-encompassing and damaging than others; others less so (but not in any way, shape, or form less important). By now, it has become startling to me when I encounter people who do not know about the Ehlers Danlos syndromes, or about MCAS, or POTS, or any of the related surprises a human body can spring upon a soul. For so many of us, EDS is actually the norm at this point.

We all have our own stories, don’t we?

For this first blog post of May, which is Ehlers Danlos Syndromes Awareness Month, I thought to create a list of different meanings for EDS.  Most of the time, it’s framed within the discourses of medicine. The opening declaration of my book, Chinese Medicine and the Management of Hypermobile Ehlers Danlos Syndrome: A Guide for Practitioners, for example, offers a standard summary: “The Ehlers Danlos syndromes are a collection of heritable connective tissue disorders that affect the body across a wide range of systems and primarily target the skin, the joints, and the blood vessels” but I promise more than just that with the following remark:  “Or so prevailing narratives tell us” (pg. 13). Throughout the book, I think I do make good on the promise to expand awareness and critical thought surrounding this disorder.

But what of our individual stories? How does perspective shift the meaning of what-this-is (or what-these-are)?

EDS means different things to different people.  As I write this, I am pondering all the varying meanings that come to my mind and I am hoping to inspire critical and creative thought on the subject.

Without further ado:

EDS is an identity: if you’re part of the fam, then the terms zebra and dazzle are well-known and you either embrace them or you don’t.  The aphorism “when you hear hoofbeats, don’t expect to see zebras” was taught to medical students as a way to remind them to look for the common ailment first.  Well, EDS is not that.  It really is the zebra and a group of zebras is a dazzle.  Spoonies identify with the notion that a person with chronic illness has a number of spoons in any given situation, and once they are used up, they are gone for the day.  The term, like zebra and dazzle, constitute a reclaiming of identity within the chronic illness community.

EDS is a call to action: Hypermobility and other evidence of unique connective tissue is not a new concept by any means.  Current manifestations of EDS and more recent developments in communities from the scientific to the everyday make it clear that (a) this isn’t necessarily a rare condition and (b) we need to ask ourselves what and why.  Where did today’s versions of EDS come from and why is this condition becoming so common?  How can we ameliorate its effects?  How can we live our best lives when we are part of this community?¹

EDS is an art form and a super power: There are artists who use their bodies just as they are in order to create living works of art.  Two people I mention in my book are contortionist and performer, Scarlet Checkers, and Yvie Oddly, a marvelous drag queen and performance artist.  In the Marvel universe, we have the character that is Charlotte Webber representing in a fantasy realm.

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EDS can be nothing other than pain, fear, dysfunction, and a long list of other less-pleasant things: No sense in sugar-coating it.  There is no place for toxic positivity when discussing EDS.  For some in the community, the painful, frightening, and disabling aspects of EDS represent what this condition is for them. Respect where respect is due.  EDS is not for sissies, no doubt about it.  And in some cases, EDS is genuinely tragic.  That is a fact.

EDS can be a complex issue that some folks don’t want to deal with: A person with EDS may be able to avoid significant interaction with healthcare providers (biomedical or other), or it may be that they can do very little without ongoing medical care.  Some within the community are independent and self-supporting; others must rely on family, friends, or social services.  Those surrounding the person with EDS have their version of the condition.  It may be something that they don’t want to learn about and so the gaslights are lit.  If you do not have EDS but engage with someone who does, what, consequently, is EDS for you?

EDS may be cause for guilt, shame, or regret: Not everyone will feel this way, but some parents may look at their kids and feel sorry for the inheritance they passed along to them.  If we are the ones with the condition and we make choices that compound the presentation of our disorder, perhaps we regret them, bitterly, and with a deep sense of sorrow.

EDS can be an inspiration: Anyone who studies this condition or admires someone for making the best of their life with or in spite of it might say that EDS is an inspiration.  I know that as a practitioner, I have a lot of respect for my patients and, in return, I’ve learned to have respect for my own health challenges.  We can learn to make do and even do very well with the hand we are dealt.  We most definitely can take pride in the accomplishments of ourselves and our communities. 

EDS can be a metaphor: As the fabric of society is shifting in response to world events, so also go the connective tissues of the body.  In Chinese medicine, we view the human individual as representative of the microcosm and vice-versa.  What, then, can you see in the larger cultural context?  In the world?  How, if you ponder it, can you connect it to your tissues? 

EDS is a path, one that each one of us creates.  As anyone who read my book or views my social media knows, I was a Spanish professor in my first career and I still come back to the touchstones of this identity even now.  And so it is that the Antonio Machado poem “Caminante, No Hay Camino” comes to mind when I think of EDS as a path:

Traveler, your footprints
are the only road, nothing else.
Traveler, there is no road;
you make your own path as you walk…²

Isn’t it true that we each create our own path as we go along our lives journeys? And if EDS is a factor, we are called to be that much more intentional and creative as we build the structures of our dreams.

What does EDS mean to you, and why?  And if you are mindfully creating your own path, where, now, will you go?

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Paula Bruno, Ph.D., L.Ac., is a licensed acupuncturist and herbalist, an AOBTA-CP traditional Chinese bodywork therapist, an author, and a health coach.  She maintains an active and growing practice at Two Hearts Wellness, her Austin, TX office.  Dr. Bruno is also available for distance appointments for wellness consultation or coaching.

In her first career, she was a Spanish professor.

Dr. Bruno’s specialties as a Chinese medicine practitioner include: • Musculoskeletal health (acute or chronic pain relief; Ehlers Danlos syndrome  & hypermobility support) • Digestive support, gut health, and weight loss • Aesthetic treatment, including scar revision • Men’s health • General preventative care and wellness support for all persons.

She is the author of Chinese Medicine and the Management of Hypermobile Ehlers Danlos Syndrome: A Practitioner’s Guide.

When you are ready to discover what traditional medicine plus a vibrant and engaged approach to holistic health can do for you, either contact Dr. Bruno or book an appointment online.

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Note: Material on this web site site is not intended to diagnose, prevent, treat, or cure any disease, illness, or ailment. A Chinese medicine practitioner in Texas identifies syndrome patterns but does not diagnose illness.  Material on this web site does not purport to identify syndrome patterns.

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Notes:

1. It may be due to my own experience with MCAS but, and as I argue in my blog post “What Causes Hypermobile Ehlers Danlos Syndrome? (A Summary of Theories),” I hold that MCAS in particular is a clarion call to investigate further the realm of environmental injury. Wherever a person’s starting point is, MCAS or no, we all–as this essay declares–must keep asking. ↩︎
2. There are more than one translations of this lovely poem. The one I prefer (and used in this post) is https://www.poetryfoundation.org/poems/58815/traveler-your-footprints but another beautiful one, with the Spanish original, can be found here at the George Washington University English Department’s poetry web site:
   https://gwenglish.org/poem-of-the-day-antonio-machados-caminante-no-hay-camino/.
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