How do you articulate your experience?
Yes, this is a loaded question. If you read it and thought of your joints, your articulations, then you read it just fine. If you went to the implication of verbalizing, you are also correct. Even so, for the purposes of this blog post, I will focus more intently on the second aspect. Language is powerful and people who live with complex health conditions can be empowered by reviewing their own habits and mannerisms in this realm.
How do you engage with your languages? How do you speak to the healthcare providers at your doctor’s office or in the hospital? How do you describe yourself as a person with EDS, MCAS, and/or POTS? How do you navigate the space between what is said and what is understood in your daily life? These are all questions to ponder as you consider how it is that you narrate your experience of chronic illness.
The language we speak in medicine:
As anyone with a chronic and/or complex disorder knows, there is a language of pain that we all speak. How we are understood (or not) creates its own cultural fabric. There are specific reasons why the fifth chapter of my book begins and ends with the subject of language. Its middle section, which outlines the different modalities we might use and what to consider about hEDS bodies in so doing. That’s the part about joints that articulate, if you ponder it. But the bracketing first and final sections reflect my background as a literature PhD and my experiences as a Spanish professor. In my first career and my second, language counts, and so does culture.
So… what about the language we use at the doctor’s office, or how we communicate needs for support when vulnerable and hospitalized? I’ve written elsewhere about medical PTSD (“Medical PTSD and Chronic Illness: Root Causes and Strategies for Survival“) and threads of discussion regarding this topic are woven throughout the text of my book as a whole.
One of the most important questions for anyone who is dealing with a medical care provider is “Whose body is this?” And the answer needs to be “Mine.” Chapter five begins with an anecdote about teaching a patient by practicing this skill and my hope is that readers will practice at home for themselves.
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We all know that being gaslit at the doctor’s office is a very real thing. As a practitioner of Chinese medicine, I have had to learn to listen with greater skill than I ever thought possible. It is an ongoing process and I genuinely put effort into it. One question I will ask is: “Can you help me to understand [fill in the blank with issue at hand]?” I want to hear the patient’s story more than once, too. When you go to the MD, no matter how special or important that doctor thinks themself to be, they need to listen to you. You deserve that.
People who live with chronic pain often don’t have a good sense of the degree of severity of their pain. They’re used to it and maybe they don’t know what it’s like to live without it, for one thing. And with a lot going on, both patients and medical care providers have their reasons for not wanting to veer off in twenty directions. We do, on both sides of the exchange, all need to filter things down to an essence, if only for the interests of time. But that doesn’t mean that your doctor or other care providers are excused from doing the work to listen to you. If they do not listen, that’s a choice.
Bottom line? Speak your truth at your medical appointments. Your body belongs to you. Your doctor’s job is to respectfully try to understand what is going on with you, or–if things are so complex that an answer isn’t possible–at least work with you so that you feel heard, seen, and respected.
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With others:
How do you describe yourself? Are you a zebra or a spoonie or a warrior? Do you have EDS or do you suffer from EDS or do you live with EDS? How you describe yourself is worth considering (as is the way others describe you).
I didn’t focus on this theme in great depth in my book, though it constitutes a thread travelling throughout the narrative. But I didn’t give it a section and you won’t leave a reading of the whole volume with a strong sense of where I land on the rather diverse landscape that reflects how people in the community describe and/or categorize themselves. What I did go into, and this I did in the following chapter, was the theme of being part of a melting pot vs. a mixed salad. That may not be an analogy that we see in the chronic illness community but it was certainly one I used when I taught languages, literature, and culture.
Imagine you are in your third semester of Spanish or Italian (I taught Italian during my first three years of graduate school in my first program). Your profesora (or professoressa, if it’s your Italian class) asks you and your classmates to discuss whether or not the United States is a melting pot (everyone combined into one homogenous stew) or a mixed salad (different parts all come together to make a whole, but they remain distinct). As I relate in my book, some people are all about the melting pot, some can see either side of the coin, and others are adamant about being part of a salad. They want to take part and they want to maintain their family and cultural heritage.
The same question works for people in the community (and when I say “the community” I mean it as an umbrella term that includes folks with EDS, MCAS, POTS, and/or dysautonomia). Is it easier to call yourself a zebra and try to blend in with the dazzle? Would you rather focus on other aspects of your identity and do so either by being part of a stew or, instead, by becoming a piece in the salad? Do the people in your life understand that you live with a complex chronic disorder or are they willfully ignorant about it and would be perfectly happy to write you off as being a hypochondriac?
There is no one good answer for that. One person may like zebras and other wild creatures, so zebra works for them. Spoonie might resonate with the next person, who sits alongside a warrior. Salad pieces can coexist with the melting pot members. I still think it’s a conversation for all of us, and I think it makes a difference as the community grows, especially, to be aware of how language creates cultures, either of inclusion or its opposite.
Pain scales and language:
Another language-related realm? Your self-talk surrounding your pain. It’s really common to not listen to one’s own body. Some people grow up in a family that minimizes pain. Others may have internalized ableist messages. How common is it for folks in the community to be so used to pain that they don’t have a good sense of when too much is really too much, and things are getting dangerous? Very common, very common.
Of our languages to ponder, then, one of them is the way our bodies speak to us and how we understand and communicate the message (or not). We need to listen to our bodies and hear them, don’t you think? That takes practice. And it’s not easy for normies either, trust me. Even so, it makes a difference to your health and wellbeing if you can listen to yourself and understand and hear.
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How we listen to ourselves and what we hear spills over, and back we come to the subject of how we speak in the medical setting. Most of us (and I discuss this in my book) learned the pain scale (that 1-10 thing that doesn’t necessarily reflect the experience of a person with EDS all that well). There’s also the McGill Pain Score, which is more complicated and maybe more useful. Maybe. When you’re talking about people with EDS, though, it’s never going to be simple. Pain is relative and when you live with a lot of it, you often have to learn to decide which pain will get your attention and which will be ignored. And you really do lose perspective on what it means to experience pain the way normies do.
Learning to listen to your own body’s warning signals requires being present for yourself and it demands great listening skills. Sometimes, this is a lesson that you need to work through under the skilled guidance of a trusted psychotherapist. Other times, you can learn on your own, or with the help of your acupuncturist or other holistic healthcare provider. Some yoga teachers know how to impart worthy lessons in this skill and so can a great health coach. But it’s worth your time and effort to learn.
Communicating your pain to healthcare providers brings us back to the question of “whose body is this?” It also is an invitation to work on boundaries and self-care and other similar. Not all doctors will listen to you, but when you practice and go into the appointment mindfully, it does become possible to hold your ground and it certainly can up your chances of being heard.
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Empowered:
As I argued in my book, EDS is not rare and it will only become more well-known as time progresses. I think that MCAS and EDS and POTS will be as common as diabetes within twenty years, if not sooner. Post-COVID syndromes have put POTS and dysautonomia on the map. With all the chemicals and industrial poisons and other similar that destroys the health of the planet, it’s no surprise that rates of autoimmunity and MCAS and cancer and chronic inflammation are rising apace. We who live with EDS, MCAS, and/or POTS are the canaries in the coal mine if not the ghosts of Christmas yet to come.
When we’re vocal and visible, we become empowered. When we figure out our own healing paths and refuse to be gaslit, we become empowered. When we find ways to live our best lives despite our conditions, we are definitely in a much better place than we might have expected.
What do you think? And what, as a result, have you to say?
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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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Holistic Health and hEDS 