Can you have EDS and an autoimmune disease? Both at the same time? Does a bear leave bowel movements in the woods? Yes. And yes, you most certainly can have EDS and an autoimmune disease. EDS is a gift that just keeps on giving, and for some of us, that means both an HCTD (heritable connective tissue disorder) and autoimmune disease concurrently.
Before sharing what Chinese medicine has to say about these matters, I think it’s helpful to give some background couched in biomedicine’s narratives. I also (this is Professor Bruno speaking here) think it’s great to have a couple reading suggestions on hand to share with you, dear reader. The more you know, the more power you have. And the more you know, the more options you can create.
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~~ Understanding your immune system ~~
In Defense of Self: How the Immune System Really Works (2008) is authored by Dr. William R. Clark, a professor emeritus of Immunology at UCLA. The book is reasonably easy to read and was written for the general public. Do you really want to learn about your immune system in an accessible and somewhat (but not overwhelmingly) scholarly way? Then this is your tome.
If you like detective novels and documentaries, another option for you might be Allergic: Our Irritated Bodies in a Changing World (2023). Written by medical anthropologist, Theresa MacPhail, this book is a history-of and it’s fascinating to read. This poor woman! She has allergy issues herself and begins her investigation with a story about her father, who got stung by a bee and died from it. Truly shocking is how a pharmacist refused to give him an epi pen because he didn’t have a prescription for one and her dad DIED as a result. This is a history, not a scientist’s outline (as we see in the first book), and the way she begins with her father’s story will hook you and keep you reading to the end.
If you have MCAS and/or you have autoimmune disease, I think that understanding the immune system itself is super important and the two books noted here are a good place to begin. Please follow the footnote at the end of this sentence for books more specific to EDS and our comorbid conditions.1
What, then, about the various terms you might be hearing at your doctor appointments?
~~ What is an HCTD? ~~
The Ehlers-Danlos syndromes are an HCTD, which means a heritable connective tissue disorder. Disorders are not the same as diseases, which usually are diagnosed based on the person’s symptoms and how they affect actual function in their mind or body. Disorders disrupt normal function. The “S” here refers to the clusters or patterns of symptoms (the syndrome) that, as a collective, make up your condition. Long story short: EDS is a disorder and it is complicated, to say the least. But you already know this, right?
~~ Autoimmune disease ~~
When your healthcare expert uses the term “disease,” what we’re talking about is a pathophysiological condition that affects a specific organ or organ system in the body. They have a specific list of symptoms and (at least in theory) a cause that can be pinpointed; again, in theory, this is supposed to make the disease treatable. In theory. Have you tried to get diagnosed with lupus? My experience with patients trying to get diagnosed with lupus is that it’s not that easy, even though autoimmune diseases have tests and standards of care and specific criteria. They can be complicated, just like EDS.
~~ Sharp syndrome & Undifferentiated Connective Tissue Disorder ~~
I treat autoimmune patients, including but not limited to people with Sjögren’s syndrome, Hashimoto’s, lupus, and/or rheumatoid arthritis (none of which are simple autoimmune diseases by any means), I have to say that MCTD (mixed connective tissue disease), or Sharp syndrome is a beast. This is a rare autoimmune condition that includes symptoms and signs of other autoimmune diseases, namely scleroderma, lupus, and polymyositis.
I have also had undiagnosed EDS patients get diagnosed with undifferentiated connective tissue disease (UCTD), This is another complicated condition. This one can cause autoimmune symptoms that mimic a connective tissue disorder but do not have the quite the overall picture that would lead to a diagnosis of lupus or scleroderma. The patient has the presentation and even though it’s painful and a pain to deal with, they’re just not quite there yet. No diagnosis, but lots of pain and frustration. (Kind of like trying to get an hEDS diagnosis, right?).
In the case of autoimmune disease, the immune system erroneously attacks you. This is not the same as MCAS, which is not the same as histamine intolerance.
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~~ MCAS vs. histamine intolerance ~~
Histamine intolerance is a metabolic issue and this occurs when a person doesn’t break down and clear histamine properly. MCAS is an immune disorder whereby the immune system attacks because… well, because it does.
In Chinese medicine, we don’t say “immune system.” Our term is Wei qi. It’s pronounced “way” and it’s your defensive qi (or immune system, if you’re speaking biomedicine). Me? I’m a smart@ss so I made a new term for MCAS: rebellious Wei qi. As I explain in my book:
“We readily speak of Stomach qi rebellion but lack a term for what happens when a person’s Wei qi revolts in the instance of MCAS. In my experience, my own ferocious and unstoppable Wei qi has given me cause to refer to its activity as Wei qi rebellion. Like the legendary inhabitants of Numancia in ancient Spain who decided that they would die before allowing themselves to be conquered by the Romans, a person with MCAS has Wei qi that is willing to fight to the bitter end for its cause.”
Chinese Medicine & the Management of Hypermobile Ehlers-Danlos Syndrome, 250n17
~~ The Long Story Short ~~
Your immune system should protect you but that’s not always how things go. Having EDS is one thing; dealing with a dysregulated immune system is another. We do tend to have a higher rate of autoimmune disease in our community and we definitely are no stranger to having a rebellious immune system.
What can Chinese medicine do for you if you have both EDS and an autoimmune condition?
~~ Root cause ~~
Piously asserting that you’re going to get to the root cause for your patients has become kind of a thing in recent years. But if you have EDS, your root cause is that your collagen isn’t functioning properly. If you have an autoimmune disease, it’s your immune system. And sure, environmental and other causes can make things better or worse, but it’s collagen and your immune system at the root of these issues. Also, you can dig deep into the roots but if the condition is genetic, then what? It feels kind of ableist to assign value simply to the declaration on someone’s advertising material that they are going to “get to the root cause” of your illness. And if getting to the root cause means you need to buy lots of supplements? That’s even worse.
In Chinese medicine we take the question “root or branch?” quite seriously. This is an ancient question that we find in the classical literature and get tested on in our board exams. Over and over, during our programs and then during the boards, we are asked whether it is appropriate to treat the branch (this would be symptoms) or the root (the deep-down cause of the matter). And there are arguments for one or the other and we do have to show that we can navigate both. This is too long a topic for this blog post but I bring it up because you may have expectations surrounding root cause and it really is important to know what that term means (and it means a lot of things, depending on what kind of practitioner you see).
We may start with what’s acute and right up under our noses or we might go for the long game and address constitutional and long-standing issues. How we decide and prioritize is an indication of whether or not we listened in class and retained what we read. It’s also a matter of experience. Different patients have different needs.
“A senior physician in Beijing that I quote in my book acknowleges the challenge of treating complex cases. He notes that the options to address complex cases may include ‘different paths, different points of attacks, different methods, including diametrically opposed methods for curing an illness,’ and the way to achieve one’s desired outcome is to ‘seize hold of a single thread, to stick to one theory [and to see it through)’” (p 228).”
–How Chinese Medicine Treats hEDS (Where to Begin)
~~ Modalities ~~
Autoimmune disease, like EDS, is complicated and challenging. When you work with a practitioner of Chinese medicine, you might get acupuncture at your appointment. You might get tui na (pronounced “twee nah,” this is Chinese manual therapy, akin to massage). We might talk about nutrition and you may get a prescription for herbal medicine. Qigong can be an excellent resource for people with EDS and for folks with autoimmune disease.2
If you’re not keen on the thought of needles, that is just fine. There are other marvelous things that your practitioner can do for you that do not involve acupuncture and poking.3
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~~ Lifestyle ~~
When your immune system is giving you a whooping, you don’t need to jump in and participate in the beat-down. Ideally, your practitioner will discuss this with you too, and support your need for rest and self-care.
“When is the last time you considered your understanding of the term self-care? Do you blur self-care and self-maintenance, or do you see the first as an indulgence (that may or may not be available to you) and the second as an ideal (that you maybe struggle to achieve)? Where does a mindful practice fit into these polar opposites? One thing to keep in mind is that there is a middle ground between self-care and self-maintenance.”
—Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It)
Having been thought this with a number of patients, I will say this, too: your practitioner can be a great source of support while you’re trying to get your diagnosis. This can be such a frustrating and demoralizing experience, but when you can go to your acupuncture appointment and vent a bit, get some support, and have a soothing treatment, you are doing the very best you can to nurture yourself during a brutal slog. You need and deserve support, and your acupuncturist may end up being just that person for you.
~~ In Conclusion ~~
It pains me to confirm that yes, you can have an autoimmune disease to go along with your EDS. As if you didn’t have enough going on otherwise? EDS is already so challenging and it can be truly demoralizing to have another complicated illness on top of it. But keep in mind this: you do have options.
No, it is not easy to resolve or ameliorate autoimmune disease and when it’s part of an EDS presentation, yes, things become that much more challenging. But anything is possible. With the support of your healthcare practitioner(s), you need to be consistent and determined. But don’t you already do that as a person with EDS? If you’ve made it this far, you are already zebra strong. Having EDS in not for wimps, you and I both know this, and neither is autoimmune disease.
You are not a wimp. You’re zebra strong.
Never give up your hope and determination.
Remember, always: you do have options.
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Dr. 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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Two Hearts Wellness/Holistic Health & hEDS does not accept paid advertising on this website and only relies on strictly necessary cookies.
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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- You know I have a blog post for this, right? Yes, I do: “Creating an EDS Bookshelf: Must-Have Reading for Savvy Zebras” can help you to put together your home library if you are so inclined to create one. Have a look! ↩︎
- There are some interesting studies of qigong and tai chi for people with autoimmune conditions. Refer to “The Effects of Tai Chi and Qigong on Immune Responses: A Systematic Review and Meta-Analysis” and “Changes in cytokine production in healthy subjects practicing Guolin Qigong : a pilot study” for more information. Refer also to “Traveling With Hope: An Interview With Nicola of Earth Balance Tai Chi” to learn about Nicola, who lives with hEDS and other comorbid conditions. Her courses are online and on-demand and I highly recommend her. ↩︎
- An old post from my primary website, “Acupuncture And More (Where to Start With Traditional Chinese Medicine if Needles Make You Nervous)” has all the details. ↩︎
Holistic Health and hEDS 