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Diagnosis.
It should–at least in theory–be useful for treatment planning. Having an identified condition should also mean that the prognosis is reasonably clear, at least in theory.
Not so fast.
Anyone with EDS or MCAS or POTS (or MALS … or … or…) knows that diagnosis is rarely linear and you know that there can be a lot of extra baggage that comes along with the process and the verdict. As a healthcare provider who doesn’t diagnose (I’m an acupuncturist, I can’t), I am there for patients and clients as they navigate this process. I’m there for the answers. I’m there for the strategizing, too. Building a program to achieve the best level of wellbeing possible is a new road to travel once the diagnosis is established, if you ponder it. It can be useful to have a trusted practitioner of Chinese medicine and/or health coach on your team, and these are services I am honored to provide.
So even though I can’t diagnose, I know this so well. And yes, I have thoughts.
Are you, dear reader, diagnosed? If you are not, do you want a diagnosis? Or, if you are a practitioner with a complex patient, are they diagnosed? And if said patient is not, do you still know how to proceed?
There are several reasons why the first two chapter of Chinese Medicine and the Management of Hypermobile Ehlers-Danlos Syndrome (Singing Dragon, 2023) are all about diagnosis. Chapter one breaks EDS down into baby blocks so that anyone can learn about connective tissue disorders from the perspective of biomedicine. Chapter two focuses on how a Chinese medicine practitioner approaches the identification and classification of EDS. That’s two out of six chapters, not including the introduction and afterword. Diagnosis takes up a lot of space in this book, and this was deliberate.
This focus is especially important in the context of complex conditions like EDS and any of the potential accompaniments a zebra may experience. It’s not easy to get an EDS diagnosis in many cases, much less a clear answer regarding any of the common comorbidities that go along with the connective tissue problem. Awareness of MCAS and dysautonomia seems to be growing but it’s no simple thing to get these conditions formally identified. And what about the not-uncommon ad-ons, like autoimmune disease, (not to mention MCTD, or mixed connective tissue disease, when a person lives with more than one autoimmune condition)? It’s not as easy as ordering a lab test with the expectation of getting clear, unequivocal results.
It is possible to find entire books that are a meditation on the theme of diagnosis written by physicians who work with complex cases. (One that I really enjoyed and discuss in my book is The Prince at the Ruined Tower by Michael D. Lockshin, MD.)
What diagnosis means can also depend on what side of the treatment table you occupy. As a patient, you have your reasons for caring about it. As a practitioner, you have your reasons too. In this post, I want to share three key factors regarding diagnosis from the patient perspective and three from the care provider side of the table.
Which of the following resonates with you?
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As a patient, you may or may not want a diagnosis.
Maybe not: Once it’s there, it’s hard to backtrack. Some biomedical doctors think that it’s better not to have an EDS diagnosis in one’s records because the patient may then find it harder to find physicians who want to treat them. With potential fluctuations in insurance laws, it might be more prudent to have HSD (hypermobility spectrum disorder) in the chart. These reasons relate more to practicality issues than anything else, and individual experiences will vary.
Definitely important: What about safety and standards of care? As many of us know, Cipro and other fluoroquinolone antibiotics are not safe for people with connective tissue disorders. If you are diagnosed and it’s in your chart that you cannot take such medications, that’s a safety benefit. And if you are diagnosed, your chances of getting referred to the correct sources increases. Is it a stomach ache or do you have MALS, for example? A person diagnosed with EDS has a better chance of being flagged for the more complicated option (not always, but…). If you know for sure, you can plan ahead so that you don’t spend your life doing hypermobile party tricks only to end up in that much more pain as an older person. Finally, it can help to be diagnosed in order to have access to accommodations, be it at work or at school. There are a lot of reasons why a diagnosis can streamline safety, care, and legal rights.
Personal factors: Validation and the human need to feel seen and heard are important factors when deciding one’s stance regarding diagnosis. When you have one health problem after the next and you are suffering…you want answers. You do not want to be gaslit. It means a lot to you to know that what you have has a name and that no, all the things that you thought were your fault or your imagination or your whatever are actually Ehlers-Danlos syndrome (whichever subtype) and [fill in the blank with your comorbid conditions]. Getting diagnosed, in your estimation, means getting answers and even, maybe, achieving some sort of closue.
There are many reasons to want a diagnosis and there are also reasons to either not care or not want one. The not-care/not-want side of the coin is more becomes more relevant to the practitioner’s end of things when they are not a biomedical care provider working within an established EDS institution. An undiagnosed patient, or one who would really rather not rely solely on allopathic approaches, calls for a different philosophy on the subject, especially if one is an acupuncturist (as I am) or other care provider without an MD at the end of their name.
The why of diagnosis can be complicated but it isn’t always the main issue. The how is what really can be the tough part. If you do actually want a diagnosis, you may be waiting a long while before you get one. It can take up to a decade and over a dozen visits to different specialists before you get your answer. You also might have to jump through one hoop after the next to find an MD who can or will do the honors. What if you don’t have anyone near you who is qualified to diagnose EDS? What if your doctor gaslights you? I see patients with medical PTSD enough to know that this is not a rare phenomenon, fwiw.1
(Please remember: If you go to the doctor in search of a diagnosis and the doctor doesn’t listen…that’s a them problem, not a you problem. Part of figuring out what’s what when a patient has a complex condition is the listening. That should be a big, big part of the intake. There is a lot to say, isn’t there?
And much listening to do as well.)
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Diagnosis from an acupuncturist’s viewpoint:
We can’t: First and foremost… your acupuncturist can’t diagnose you. Depending on the state where they’re licensed, they may be able to be your primary care provider (this is true for Florida, New Mexico, and California), but even then… And in Texas, where I am, we identify syndromes according to Chinese medicine but do not diagnose anything from a Western perspective. In my practice, because I treat so many EDS patients, I can give you my seasoned professional perspective on what you may “have.” I can also map out your signs and symptoms and help you to put together your case for your MD if, in fact, you want a diagnosis. It’s not a firm diagnosis that can go into your electronic health record, but this type of support can be tremendously encouraging and sometimes extremely useful. So…
Respect matters: Some people do not want a diagnosis. In my own practice, I see a lot of hEDS/HSD patients and my book is prominently displayed in my front room. Not everyone comes to me for connective tissue concerns and I do see people who–in my estimation–are having health problems due to this very issue. But HSD/hEDS is not on their radar and they might not want it to be on their radar. I also see people who are pretty clear about their health problems but they want to avoid biomedicine as much as humanly possible. I can go along with either of these scenarios up until anything potentially breaches my scope of practice or my ethical obligation to do no harm. Patient safety comes first, whether or not a diagnosis is the ultimate goal or outcome.2
Safety and scope of practice: When a practitioner sees red flags it may be necessary to seek a diagnosis. This can be tough. Someone with a marfanoid habitus (they clearly look like they have Marfan syndrome), for example, should be gently steered towards an MD. It can be hard to have that conversation with a patient. As a practitioner, I don’t want to alarm anyone and I do not want to overstep my authority. But I can’t turn a blind eye, either. The same goes for MALS or any other complex issue that can be easily overlooked at a biomedical general practitioner’s office. People need clear information and they may need ongoing biomedical care. That doesn’t mean that I push these patients in one or the other direction (to diagnose or not to diagnose, that is the question…) but I do need to stick to my (legal, ethical, and moral) lane while supporting them in a meaningful way.
So I will ask once again: are you diagnosed? Do you want to be diagnosed? Or, if you’re the practitioner…do you have undiagnosed patients? Do you think that they need some answers? What can you do for patients who need answers?
Before I knew about complex chronic illness, I thought that things were simple: you get sick, you go to the doctor, the doctor tells you what’s what with you, and–with that diagnosis on the table–you get your treatment protocol and things get better (or not, depending). It’s funny that I thought this because I have a long history of adverse events in response to prescription drugs and–until I found Chinese medicine–no good answers (and a lot of gaslighting) at my doctor visits. So why I thought it was so easy for others reflects my own ignorance at the time. Or innocence, if you ponder it. And I learned, as many of us with complex conditions do learn, that no, it’s not that simple.
Long story short, though? A diagnosis, in the absence of safety concerns, is not the be-all, end-all. You may not want a diagnosis. If you are proactive about your health and you work with a medical care provider that can alert you to red flags and support you as you engage with allopathic medicine, you don’t necessarily need a diagnosis. But if you want one, you should be able to get one, and you deserve to be treated with respect in your quest to find answers. And if you need one, even more so. Whatever your story is… you deserve meaningful support as you navigate the healing journey of your choice.
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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 more on this topic, refer to “Medical PTSD and Chronic Illness: Root Causes and Strategies for Survival.” ↩︎
- This is an entire topic and yes, I do cover it in my book. The short version of my feeling? Hypermobility is fairly common and not everyone needs a diagnosis. When I have a hypermobile patient, I educate them on the subject and let them set the pace as far as following up on it goes. In the absence of medical red flags (or expressed interest on the part of the patient), I do not center their hypermobility unless or until it becomes important to the stated health goal or goals. ↩︎
Holistic Health and hEDS 