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Have you ever tried tai chi or qigong? So many of us get asked if we’ve tried yoga (to the point where some of us want to scream when we hear that word) but it seems to me that Chinese practices are not as common as they could be in the chronic illness community. As a practitioner of Chinese medicine, a health coach, a wellness blogger, and as an author, I do feel like I contribute to the community. But we need resources in a wide range of realms and I hope, when all is said and done, that I will contribute meaningfully to community building in the realm of holistic health for people with EDS and MCAS. There’s more to life than allopathic medicine and nothing but…you just need to know how to look for these resources and ways to assess how well they might work for your particular situation.
I do a lot of looking and assessing on behalf of my patients. Early on in my practice, in fact, I went searching for tai chi and qigong specifically for people with hypermobility syndromes. This is how I found Nicola, the owner and lead instructor at Earth Balance Tai Chi, and I’ve wanted to introduce her to my readers for a long time.
Here is our interview.1
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It sounds like your EDS diagnosis journey was quite a long and winding one.2 Were you relieved to get a diagnosis?
Not in my case sadly; it still feels like sand running through my fingers. I’ve been misdiagnosed, diagnosed, re-diagnosed over and over from childhood in the 1970s right up until last year 2024.
Did getting a diagnosis help you?
No.
And how are you doing today?
Managing as best I can day to day outside of allopathic medicine. An added complication is entering into menopause early and dealing with those symptoms alongside EDS.
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How did you find tai chi…what drew you to it? What, as a person with EDS, makes this modality work so well for you?
I had always had a keen interest in Taoism and was recommended to try Tai Chi and Qigong by my first Taoist teacher around 2006. At the time I was a keen sportswoman, and it seemed a great way to unwind my body from high intensity of athletics training with some gentle stretches and relaxing movements.
Tai Chi, Qigong, and Taoist meditation as a combined practice are exceptional at managing pain, fatigue, the physical symptoms, and the impact on mental health. The practice can shift a multitude of areas: from joint stabilisation and integrated muscle strengthening, proprioception and embodied awareness, movement and posture re-education, tissue pliability and tension release, to somatic exploration of the mind and body, building mental resilience, self-compassion, and the ability to cope. All wrapped up in what seem to be very unassuming exercises and relaxation techniques.
You are such an amazing resource and your website is full of valuable information. I discovered you because I was looking for options for my patients and you were the only one that I found. I even mentioned your program in my book, Chinese Medicine and the Management of Hypermobile Ehlers-Danlos Syndrome, because I could not find anyone closer to me here in Texas. Honestly, I think it’s surprising to see how little tai chi is recognized as an EDS resource and was so grateful to find you. Why do you think that tai chi is under-represented in EDS communities?
Thank you so much for your ongoing support. I too do not know why Tai Chi and Qigong are so under represented, as they are such a life saver. It feels like a closed system, which is sad as the potential for Tai Chi and Qigong to support many more people with EDS is vast. I have spent 15 years trying to raise the profile and it has felt like a tiny drop in the ocean. My goal writing about self-managing chronic health stems from not wanting another person go through what I have gone through on my health journey. The resources I create are for my younger self. There was nothing like that 15 years ago, it was a very lonely, dark and vulnerable time for me.
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Possibly answering the previous question here, but… I am left with the sense that there is some gatekeeping within the EDS establishment and that Chinese medicine and tai chi are not widely embraced as a result. Do you have that sense?
Yes, I do. I feel it is a case of both who you know within the EDS establishment, along with the rejection of TCM and Taoist practices. Perhaps as “we” are seen as “woo woo” or “new-age”, which is simply not the case. Tai Chi, Qigong, Taoist meditation, TCM, acupuncture, herbs, tui na etc, have all been clinically proven to improve health and wellbeing.
That said, they are not a quick fix. They take a long time to learn, are complex and take effort to develop as a cultivated skill. To get to the “relaxation” and “softening” part can be a long process. When you consider your connective tissue takes around two years to re-wire, most people do not have the time or energy to commit.
The other challenge is the quality of teachers varies greatly. There is a lot of watered down or Westernised Tai Chi and Qigong out there, which amounts to nothing more than waving hands in the air or playing with Qi balls like some kind of mystical power. That tends to be the most publicised. And at that point, they are about the least healthy exercises you can do and have little connection with the traditional practices.
Do you feel like it’s better to do something about it by pressing at the gates or do you think it’s smarter to accept that we never may find mainstream acceptance and so you will continue to carve out your own niche in your own way? (Personally, I think options are good. I don’t believe that Chinese medicine needs to twist itself into knots to please biomedicine. We can work together as warranted AND we can each have our own spaces).
Like yourself, I am doing both. I continue to publish public resources that focus on the tangible physiological health benefits so my mainstream audience can relate to “what is” through a left brain Westernised perspective, which is a great way to connect and find common ground. Along with teachings that explore Traditional Chinese Medicine and Taoist practices, to sense into “what if.” My favourite quote is “I’m not interested in competing with anyone, I hope we all make it” – Erica Cook.
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I recently posted an essay about men and hEDS that I’ve been sharing for Men’s Health Month.3 In my practice, I do treat men with hEDS and I am of the opinion that more men have it than is acknowledged. What about you? Do you see more male students or female ones?
Yes, I have a mix of students with EDS and hypermobile syndromes. Although my male students with EDS are younger in age, around the 20-35 age bracket. I feel that this generation of men are more open to expressing their struggles and exploring their health, more so than the stiff upper lip and just get on with it generation. My female students with EDS are all ages, from young to senior. Most arrive at my door when they have been through the NHS and don’t know where to go next.
Are most of your students in the UK? Where is your community located, if not?
The majority of my students are in the UK, as I teach community classes and private tuition on the Isle of Wight, located just off the south coast of England. Most of my students with EDS are taught through online private tuition on MsTeams / Zoom and live all across the world. I also have a global community group on Patreon, where my videos courses such as the ‘Hypermobile Body Programme’ and my ‘Hibernating Bear Programme’ (chronic illness support) are found.
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I have noticed that the UK has good resources for pregnant persons (see, for instance: EDS Maternity Co-created Tools, and the book Stretched to the Limits was written by an author from the UK, Rachel Fitz-Desorgher). We in the USA lack such resources but we do have a broad range institutes for EDS research and treatment. You mention that the NHS is not necessarily helpful; has that changed in recent years?
Not in my personal experience, and that is echoed by the majority of my student’s experiences too.
What are some of the practical issues or barriers to care that people with chronic illness face in your local area?
Medically, there is a lack of person-centred assessment, lack of understanding, lack of information, and a lack of validation. Many people experience medical gaslighting and medical neglect. You are merely a list of symptoms and the main intervention offered is pharmaceutical. The lack of funding means that therapies that could support are not available and equally not signposted.
Financially, the majority of people are on a low income, struggle to maintain employment, and are not receiving the health care that they need to improve their situation. They are not able to pay privately for therapies, which excludes all physical, complementary and alternative medicine.
I’ve only visited England a couple times but I lived in Spain and Italy during my twenties (I’m also of Mediterranean heritage and was a Spanish professor in my first career). How do cultural norms affect people with chronic pain where you are?
Those living with chronic pain broadly speaking fall into three groups.
1) Those only focusing on the pain/illness, who are not active in their pain management. The pain persists, becomes their identity and they develop a victim mentality. They do not take responsibility for their own journey or pain experience.
2) Those with the stiff upper lip that do not seek support.
3) Those proactive in their pain management. Their identity is not the condition, it’s just something they live with, it doesn’t define them. They take active, consistent and committed steps to reconstruct their lives post onset / diagnosis. These are the people that find me.
On a societal level, as an invisible condition, there is ongoing lack of visibility, recognition and understanding. Family members, close friends, colleagues, employers etc., tend not to understand a person living with chronic pain. It can be very isolating and lonely feeling misunderstood by everyone. The majority of my students are not well enough to live a full life; however, they are also not unwell enough to receive support. And those without any support network are sadly common.
Is there a stiff upper lip mentality that constrains people or is there a vocal chronic illness community and culture?
Yes, the stiff upper lip mentality is common in the generations post 40 years old. Younger generations are much more likely to be vocal, open and will seek support.
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Personally, I love meditation and practice regularly. It’s sometimes hard to focus, though, especially if I’m already wound up before I start. What tips or insights can you share for people who think that meditation is not possible for them?
There are many routes into meditation, there’s not one method that works for everyone. At the root is breathwork. Slowing down and regulating the breath to around 6 or 5 breaths per minute is the key to activate the relaxation response / shift states.
Tip 1: start with 1 minute per day. Slow down and follow the breath through felt sense. Add this to the end of a routine e.g. after brushing teeth at night. Establish teeth & meditation as a new combined routine. It’s much easier to add on time than to carve out a completely new routine.
Tip 2: find a meditation that you love doing, whether mindfulness, movement, breathwork, Buddhist, Taoist, Shamanic, mantra, chanting, journey work, prayer, body scanning, progressive relaxation etc.
Tip 3: release the mind of expectation, release the pressure of performing, just be in your body for the sake of being in your body.
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What would you like readers of this blog post to know about you, and about your views on tai chi for people with EDS?
That I am just an average Joe, who lives with EDS and happens to have spent 19 years as a Tai Chi, Qigong and Taoist meditation student. Like me, anyone out there can become proactive in their health management, can learn new skills, can re-wire their bodies through exercise, can build a self-care tool kit, and improve their quality of physical life and mental wellbeing. Most importantly anyone can learn skills to down regulate and self-regulate stress. To soften when faced with adversity, to live gracefully through ebb and flow, and learn the gentle power of the absence of resistance.
At the core, the practices are really about reunion. They help bring you back to yourself, who you are below the stories, emotions, the demands of modern life, the digital world, labels, diagnosis and the noise. They’re moving you away from the left brain, anticipatory, hyper-vigilant, dopamine led state. They help you to come home to a natural state of being.
Lastly, I’ll leave your readers with a quote from one of my dear students with Parkinson’s disease: “travel with hope.”
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It is a great reminder to all of us, this kindly admonition to travel with hope.
In so many ways, those of us with chronic conditions (especially when they are complex and not well-known or completely understood) are travelers on our own journeys. For many, knowledge is our super-power. We do a lot of our own research and we create and share wisdom for living at our best level. Tai chi, qigong, Taoist meditation, and other holistic practices truly can change the dynamic for so many. Learning to lovingly and mindfully be present for one’s body and finding ways to rest and soften into our selves is a way to build hope and possibly even nurture a new level of wellbeing.
If you’ve never tried Chinese medicine, or Asian breath/body work… maybe now is the time to start. What do you think?
And where do you find hope?
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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
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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- For my first interview here at Holistic Health & hEDS, I wrote back and forth with Caroline Evans, perhaps best known for her stint on Ink Master. “Tattoos & EDS, MCAS, & POTS, Part III: An Interview With Ink Master Alum Caroline Evans” is one of three posts on the subject of tattoos and EDS. Stay tuned, because there will be more interviews to come in future posts. ↩︎
- For Nicola’s story, which she updated over the course of several years, refer to “Living With EDS: My Personal Ehlers Danlos Syndrome Story.” ↩︎
- “Ehlers Danlos Syndrome and Men: Three Key Issues” has had an interesting run. I have gotten good feedback from male readers but it’s probably my least-read blog post to date. Are there not that many guys reading my blog posts? Or is it just less interesting to readers? I do not know, but I feel pretty strongly (and this is based on my clinical experience) that men do suffer from EDS and that yes, they do deserve attention and resources. ↩︎
Holistic Health and hEDS 