Ehlers-Danlos is a complicated matter, as anyone who has experience (either lived or by proxy) understands. It’s not a cookie cutter issue. There is no one single easy way to work with it and, when possible, thrive despite all the challenges. An optimal life with EDS requires ingenuity, determination, and creativity. My own experience with EDS people is that they have these qualities in abundance. Adding to this list are other must–haves: an optimistic spirit, a refusal to give up, and a growing network of resources and support systems that can be found on social media and other venues. Traditional Chinese medicine (TCM) can also be invaluable, as can a support system that includes a health coach. EDS is a lifelong challenge but with the right plan, it can be managed. With some luck and a lot of determination, the spirit can flourish no matter its outer shell and carrying case.
~~~Traditional Chinese Medicine in General~~~
Working on the assumption that people with EDS have a Western medical care team already in place, it is safe to say that a traditional Chinese medicine practitioner can make a great member of the collective. Western medicine tends to hone in on specific symptoms. Traditional Chinese medicine prefers to look at syndromes and collections of symptoms that make up a pattern. Because EDS is a complex syndrome in and of itself, the shift in perspective may help uncover creative and useful ways to treat pain, fatigue, anxiety and other aspects of EDS. There are some studies of Chinese herbal remedies and their effectiveness in treating EDS pain (see here), for example. Another benefit? Because your TCM practitioner is accustomed to treating the whole person, you can expect a longer intake and more personalized interactions as you work to find the best way to manage your individual situation. An acupuncture treatment will be carefully calibrated to work with the ability of your body to tolerate the fine, small needles typically used. And if needles cause you undue stress (or you tend to bruise easily) then traditional Chinese bodywork can be of immeasurable use for an EDS person.
~~~Asian Bodywork Therapy: Chinese Tui Na & More~~~
Traditional Chinese medicine has a lot more to offer this condition than simply acupuncture. One of the pillars of Chinese medicine is tui na, or traditional Chinese manual therapy, and I wrote about what this modality can do for EDS folks here. There are several more reasons why this modality can be of service to EDS populations and I will outline two of those reasons in this particular blog post.
First and foremost, a practitioner who is an AOBTA-CP has undergone a substantive course of study in order to be able to practice (see here). The AOBTA part references the American Organization for Bodywork Therapies of Asia and the CP designates a certified practitioner. When you go to an AOBTA-CP you can feel confident that your practitioner is highly trained not only in manual therapy technique but also in the tenets of traditional Chinese medicine. You’re not just getting what may or may not be a lovely spa-treatment massage (which can be problematic in and of itself, as those who have been injured during a session can attest) but, instead, a treatment that is akin to acupuncture but without the needles.
Caveat: Look for AOBTA-CP qualification when you consider tui na, because different states have different laws. In some states, a massage therapist can undergo a weekend seminar and then advertise “tui na” as one of their skills. An AOBTA-CP can do much more than simply perform a few or more of the techniques. We study, train, and conceptualize treatment according to the principles of TCM. There is a difference between learning a few techniques vs. actually spending the time to learn the full range of them plus the philosophy underpinning the entire practice. To do that, it takes more than a short seminar. Myself? I undertook extra internship hours for myself, I was asked to share treatment rooms with friends during their internships so that I could give them feedback on their work, and I audited the techniques and the upper body courses for review. Long story short? Go to someone who is a dedicated practitioner and a duly-certified one and you will, in so doing, derive the benefit of traditional Chinese philosophy and practice.
The second reason to consider an AOBTA-CP for tui na is not just due to the level of training and the trust that the AOBTA-CP qualification engenders. Consider, also, the results of a well-planned treatment sequence. Keep in mind that tui na can also be of invaluable benefit for calming the system. What’s really nice is that your practitioner can work on your feet or other distal areas if you are especially mobile in the shoulders and hips, for example. There is a lot you can do with a qualified and experienced AOBTA-CP, including but not limited to stress reduction, pain amelioration, and the capacity to learn about and maintain a healthy body awareness.
One example? A person with MCAS, which is so very common with EDS, for example, is on perpetual hyper-alert. PTSD and/or chronic anxiety are also conditions associated with chronic illness. Having a place of safety is that much more meaningful when one’s body can’t provide the same just by existing. When you can go to a tui na appointment and simply relax within your body, consequently, that is a moment of rest that can do more than just feel good in the moment. When you develop a genuine relationship of trust with your practitioner, you may get to the point where just entering the treatment room causes you to feel calm. You may become habituated to seeing the treatment room as a safe place to be, a healing space and a healing spa, too. Just as your system can be on hyper-alert for threat, it can also be primed to see the treatment table as a haven.
~~~Health Coaching & How It Can Help You~~~
Considering that health management is a full-time job in many instances, it can be very useful to have a support system outside of the medical team of caregivers. Appointments with the MD can move pretty quickly and it can be helpful to have someone to with whom one can decompress and set goals. There are three main areas where having a health can coach be especially valuable.
Emotional and mind-body support: Depending on their qualifications and abilities, it’s possible to decide on significant goals and achieve them with your coach. A good coach isn’t there to be a psychotherapist and they aren’t going to let a client wallow either. Some days are rough days. But your coach should be a positive force to help you to help yourself. Many coaches, myself included, are able to guide meditation sessions. We can educate about diet (though not prescribe food programs unless we are registered dietitians or otherwise duly credentialed), and we can help you to reframe your self talk around your body and your health. You and your health coach should be able to figure out what your own individual best version of health is and then determine what’s in between you and your personal best. Your version of health is not the same as that of the next person’s. But everyone can get value out of parsing what is available and how to achieve as much wellbeing as possible within that framework.
Research support and potential interaction with your medical team: Different coaches have different levels of capability in this area. When you look for a health coach you can find ones that have interesting and unique qualifications. You can also find many who are in some way in an allied health field. If you choose correctly, your coach can be a great support as you navigate your relationships with your medical team.
And me? I wrote about my socratic method of coaching here; the short version is that I am on my second career now that I am in the field of TCM. My present professional status is that, in addition to my PhD from my previous career, I have earned a four-year master’s degree in acupuncture and Oriental medicine, I am an AOBTA-CP, and I’ve completed my board exams for my acupuncture and herbalist license. All that’s left as of March 2018 is the process of getting my license, which is mainly a question of paperwork and waiting (On edit: the paperwork is done and I’m a licensed acupuncturist as of summer 2018). I used to be a professor. For examples of how I coach, do look at the link; what matters to you is that I am able to help a client to communicate more effectively with their physicians and that I can offer the sort of teaching and learning that a student at university can expect. This can be useful for people who have a lot going on, health-wise. Also, as necessary, I can communicate with Western physicians in a creditable way.
Help to determine which exercises are acceptable for your body: Exercise is possible for everyone. I’m certified to teach yoga and I undertook considerable extra training to work with disabled veterans. Trust me–there is an adaptive posture for everyone, even for those without limbs. As a certified personal trainer, I am able to make programs that fit anyone. My primary focus is TCM and I do not take long-term training clients and I don’t teach yoga classes. What I do, instead, is use these qualifications for when I’m working with someone and they need a specific lesson. Otherwise, I refer out. However, when I refer, I make sure that I’m in contact with the trainer or yoga teacher so that my client is getting the appropriate level of challenge in their exercise program. A good coach should be able to do the same for you. Many coaches are dual-certified so they can offer personal training or yoga along with their coaching services. It is possible to find a situation in which you can be coached and trained by the same person. If not, your coach should have a wonderful referral network to get you set up with the best person for you. Whatever you opt to do, though, you want someone who knows and understands EDS so that what you are doing is appropriate to your level of health.
Any doubts that exercise is not beneficial for an EDS person? Take a look at this article, and notice that it appears on an acupuncturist’s web site: here. If you are careful and if you work with someone who understands the condition, exercise can be great for your health. Finding a way to establish a soothing mind-body connection, having support as you research ways to achieve your best version of health, and guidance and presence as you establish an exercise program? Yes! This is what a good health coach should be able to do with you. (That said: a good health coach is NOT a replacement for your medical team. It’s crucial that you know their credentials, background, preparation, and experience with EDS. Your health coach, trainer, yoga teacher, and your TCM practitioner should be able to explain outline their credentials and training AND they need to respect the authority of your primary care medical team. For your benefit and safety, everyone needs to be on board here).
EDS and all that can accompany the syndrome are a marathon that seems to have no ending. However, with appropriate planning and a well-thought approach to self care, it may be possible to achieve a best life that you had not yet imagined. What makes EDS so challenging is not so much that it’s negated or dismissed the way some rare diseases are (think, for example, of how chronic fatigue syndrome is viewed in some sectors). It’s hard to pretend that it’s all in a person’s head if their arm comes out of the socket at the change of the breeze. What makes this condition so utterly challenging instead is the complexity and the sheer number of different ways it can present, the difficulty of diagnosis in some cases, and the range of comorbidity that any one individual can experience. A health coach and/or a TCM practitioner aren’t going to replace your Western biomedical health support system, but either or both can certainly enhance what you do outside of your doctor appointments.
Having someone in your corner who can help you to parse it all out is a great resource. And knowing about the kind of self care that will help you rather than hurt can make a huge difference in quality of life, too.
Are you ready to see what traditional Chinese medicine and/or health coaching can do for you?
Have you ever though to try traditional Chinese bodywork? At present, I offer tui na (similar to massage) and other ancient Chinese therapies, including cupping, gua sha, moxa, and more. If you are looking for a holistic wellness consultant and coach, my services can entail short or longer term programs. You are your own best investment, and when you take charge of your wellbeing you invest in yourself now and for the benefit of your future.
Two Hearts Wellness is a local holistic health and wellness outfit with a passion for all things nourishing, including but not limited to: joyful living, great food, art, and literature, and–of course–traditional Chinese medicine. If you want to learn more about me, click here and do feel free to follow my blog and/or my Instagram, connect with me on Facebook, or contact me here to set up an appointment for personal training or health coaching services. If you are interested in Asian bodywork therapy, click here to book an appointment online.
Note: As always, what you read on this web site is in no way ever meant to replace your relationship with your MD. No medical advice is implied or offered. The content of this web site is intended for educational and entertainment purposes only.