Caught Between a Diagnosis and a Prognosis

Language shapes the way we humans interact with the world. Of the roughly 7,000 languages on earth, somewhere between 50-90% are heading towards extinction by the end of this century*.These are words that have been formed by multigenerational communion with a particular space on this planet. This loss matters. Languages contain stories and beliefs that can never be fully appreciated or understood outside the context of that particular culture. This point is exemplified in Daniel Everett’s book Don’t Sleep, There Are Snakes, an account of an English-speaking anthropologist living with the small Amazonian Piraha tribe**. He originally came to them as a missionary, with the goal of translating the Bible into their language. But as he lived with them and learned their dialect, he found that to be an impossible task. He writes, “My difficulty in successfully translating the Bible owed largely to the fact that Piraha society and language are interconnected in ways that make even the understanding of grammar, a subcomponent of language, impossible without studying the language and culture simultaneously. And I believe this is true for all languages and societies. Language is the product of synergism between values of a society, communication theory, biology, physiology, physics, and human thought.” When I read about place-based languages and the contextual gifts they bear (like the Inuit language containing dozens of words for snow and ice), I am left feeling like my mother-tongue is quite dull. As someone who speaks the conquering language of English, I am motivated to examine how we might consciously influence the evolution of our communication, or at least be aware of how our language is influencing our conversations and our thoughts. There are innumerable aspects to this quandary; specifically here, I will be riffing on the language of diagnoses. Within a language lies the foundation for how the culture views health and illness.

I have long thought about the effects of receiving a diagnosis of a chronic condition within the world of western medicine, or biomedicine. A diagnosis is the identification of the nature of an illness by examination of signs & symptoms. Sometimes a diagnosis refers to the root of the problem, or sometimes it is just a word to describe that particular presentation of symptoms. On the one hand, it can be enlightening and relieving to know what the “problem” is. The possibilities become narrowed and, therefore, the approach is targeted. On the other hand, this narrowing view of the “problem” often feels concrete and long-term. Some common diagnoses in biomedicine are: ulcerative colitis, heart disease, herniated disc, attention deficit & hyperactivity disorder, anxiety neurosis. When I hear these words, they sound like labels: definite, immovable, heavy, the end of the story. Receiving these labels can seem like health is in the past, and this illness is the new normal. I can think of a few reasons for this. One reason is that many allopathic treatments are symptom suppressors, but do not reach the root cause; thus, the conclusion is that the disease can be managed, but not cured. Another reason is that a diagnosis always comes with a prognosis; an expectation of how the disease will play out (which is usually void of any lifestyle considerations). These predictions have a powerful effect on our psyche, and can limit what the path to balance might look like. In some cases, these predictions are full-on death sentences. Too often biomedical diagnoses and prognoses give us a sense of feeling trapped in our body, victims of the inescapable. 

For a handful of years, I have been flirting with Chinese medicine diagnostics. If you see an acupuncturist, your condition might be described as yin deficiency, qi stagnation, liver yang rising, or damp heat in the lower burner; translations from an older language and culture. These phrases dictate an imbalance; a state that is fluid and able to be influenced. To me, this wording feels empowering, like the beginning of balance. As a western herbalist who is probably too dependent on my biomedical training, the autonomy that comes with an elementally-influenced diagnostic system inspires hope for flexibility and affirmative change within oneself.

When dealing with biomedical specialists whose speech may be saturated with disempowering diagnostic language, I think most folks could benefit from a hefty dose of both body awareness and ravenous research. I’ve rarely heard of good treatment results from solely depending on a doctor for a “cure”. They have allopathic tools that can be utilized; but when it comes to diet and lifestyle (critical factors in any sort of recovery), I’d be more interested in what my neighbor’s cat has to say! In our culture, doctors are seen as THE expert, the final say, and I personally think this is harmful. I find it extremely worthwhile to seek out other peoples’ experiences, alternative advice, read patiently, and think critically. At the very least, become familiar with the side effects of any medications you might take. If someone is trying to sell you something, then take their advice with a big grain of salt. Depending too much on one “expert”, whether that be a doctor, a naturopath, or anyone else, can strip you of your own intuitive powers. And this is precisely where I think about the importance of body awareness. To me, body awareness is an intimate acknowledging that the body knows what it needs, if we take the time to cultivate our listening skills. This decreases dependence on experts and shifts power to the individual living within that body. This awareness notes the experience of dis-ease, but is not dominated by the disease; an approach that takes time to (1.) unlearn cultural conditioning that lies in the very way we speak, and (2.) discover an intuitive, “deep-knowing” way of moving through the many seasons of life. Body awareness recognizes that our entire existence is psychosomatic; that is, our mind and body are one entity. Our emotional state is always influencing our physical experience, and vice versa. I don’t mean to make this sound easy, or a “cure-all”. It’s not. It is hard to go against the flow of receiving our assurance from someone with letters behind their name. And some conditions are chronic no matter how hard you wish it away. But that is all the more reason to invest in cultivating body awareness; not just for the individual, but to collectively shift our disempowered state. It is always worth compassionately asking the self, “What do you need? What would make life more wonderful?” Aimless time alone, along with deep breathing, is a good place to start when you’re caught between a diagnosis and a prognosis.

To increase body awareness, I have been finding it helpful to work through Full Catastrophe Living, by Jon Kabat Zinn; a guide to mindfulness meditation specific for coping with pain and illness.

I’ve also recently come across The Fourfold Path to Healing, by Thomas Cowan, and find it to be a very holistic reference for health and dis-ease. A worthwhile addition to your resource books.

*https://www.sapiens.org/language/endangered-languages/

**Don’t Sleep, There Are Snakes, by Daniel Everett. 2008. (A fascinating read!)

Elimination Diets & Disordered Eating

Cover of Zine 7 - Elimination DietsElimination diets are a helpful diagnostic tool for identifying food allergies and intolerances. I recommend them fairly often to clients for various health issues. To streamline the process of explaining an elimination diet, I have written a how-to zine which can be found in my educational resources, Issue #7. In the writing of this, I interviewed a number of friends who’ve gone through the process to hear about their outcomes. It was a common theme to hear about elimination diets leading to and/or triggering disordered eating, or full-blown eating disorders. So I wanted to highlight the connection in this blogpost.

My friend Audra Locicero, of Beautyberry Apothecary, shared her own experience, from which we can learn a lot…

Beginning in my early 20s, I started to experience a variety of health issues that felt oddly out of place for my age. These included a lyme disease infection, gut dysbiosis, and chronic inflammation, and manifested as fatigue, depression, anxiety, digestive issues, brain fog, headaches, and joint and muscle pain. Determined to live a life less encumbered by pain and illness, I decided to adopt a variety of healing diets as a way to address the source and the symptoms I was experiencing. My knowledge of herbs and nutrition and my general worldview, as well as the guidance from various health practitioners at the time, led me to look to food as both a root cause of imbalance and a source of healing.

The specifics of the way I ate transformed over time, but almost always included the elimination of gluten, processed sugar, and alcohol. I took those three ingredients out of my diet entirely for about four years. I also experimented a great deal with the GAPS diet*, abiding by it for long stretches of time intermittently. This included the addition of bone broth daily (which overall I think was very nourishing and am still fond of today). For some time, this way of eating felt really good – I felt that I was in control of a major factor in what was keeping me unwell. Overtime however, in an attempt to assuage the symptoms that were ever-increasingly plaguing me, digestive upset in particular, I began to eliminate more and more things from my diet, eventually removing all grains, dairy, fruit, starchy vegetables, legumes, raw vegetables, nuts, and certain fats. I was left with bone broth, and cooked meat and vegetables. I ate in this way for about four months before I crashed and burned, and eventually saw the light. This was a really dark time. All I could think about was the foods I was not allowed to eat, all day, everyday. I avoided things I previously loved like sharing meals with family and friends and going out to eat. I lost a ton of weight and my period, too. All the while, my digestion, the very thing I was eating to support, was suffering more and more.

Somehow, in a stroke of enlightenment, or more likely a deep survival instinct, I was able to see my situation for what it was: an eating disorder. I almost immediately began to eat whatever I wanted and all of my symptoms improved. I gained all my weight back and more, my menstrual cycle regulated, and my digestion improved, too. I often joke that I turned cheesy pasta into 20% of my body mass in 3 months (the weight I lost and then gained back), a glorious feat! It was an incredible turn of events and I’m so grateful my body eventually had the wisdom to override my mind and seek what was best for me. Orthorexia, or an obsession with “healthy” eating, is not officially recognized as an eating disorder by the Diagnostic and Statistical Manual of Mental Disorders, the international authoritative handbook for health care professionals on the diagnosis of mental health disorders, but it’s my best guess that it will be in the near future. My presentation and experience read orthorexia to the T, which was both shocking and empowering.

In sharing my story with friends and family, I’ve learned that so many people deal with this type of disordered eating, women especially. What I know now about myself (and the disorder, too) is that I don’t have the mental constitution to eat in such a rigorously restrictive way for such a long stretch of time. While I don’t have an official OCD diagnosis, I know that I’m someone who deals with obsessive thought patterns, anxiety, and perfectionism, and have for as long as I can remember. While some people may be able to maintain an elimination diet for a lifetime even, I believe that great care must be taken before suggesting such a diet to people with a known history of OCD, eating disorder, or anxiety, as it has the potential to do more harm than good. I do not wish to entirely discredit the practice of eating a prescribed healing diet, dabbling in elimination diets, etc, as I think they can have great value for many people; there is no one size fits all approach to healing. I simply hope that through experiences like mine we can become more well-informed, compassionate citizens of the world. This is the responsibility of health professionals especially – herbalists, in my case, but doctors, acupuncturists, and nutritionists, too.

So, what happened to the original symptoms I was hoping to address with these diets many years ago? Some have fallen away, some remain, and some new ones have taken their place. Now, three years later, I eat whatever I want, mostly. I limit gluten and processed sugar for the most part, and don’t have much interest in alcohol, but overall I am so much less restrictive. In some ways, I feel like I withstood the most rigorous elimination diet of all time, and came out the other end with real information about what is good for my body (for example: dairy and gluten-free grains are no issue; gluten and sugar make me feel inflamed in large, continuous doses). Unfortunately, even limiting certain things to a few times a week is still a slippery slope for me mentally, as I imagine is the case in most eating disorders. At this point, I still have to be very cautious about the way I frame the value of various foods in my mind (say, labeling something as healthy or unhealthy) and I can’t meddle in any prescribed diets. I stick to these boundaries as an act of kindness to my mental health. For now, it is a line I still cannot cross, but I hope that it eases in time. If I chose to eat something, regardless of what it may be, I have to trust that it’s nourishing me.

Through these personal experiences I’ve learned a lot. Being an herbalist, folks sometimes ask me for advice on what they should eat. These days I often say: eat whole foods, in variety; just about everything is ok in moderation; and please, eat with your loved ones, for health AND for joy.”

Thank you Audra, for sharing your experience.

*GAPS diet: “Gut and Psychology Syndrome”, by Natasha Campbell-McBride, 2010

2020 Menstrual-Moon Calendar

At the beginning of every year, I bust out my calendar, alongside a ruler, paper, and pen, and I draw another calendar for charting my menstrual cycle along with the moon cycle. Here is my 2020 version:

How to use:

The calendar is on a 28 day cycle, which is why some days of the month overlap. Upon the first day of your cycle (the day your begin bleeding), circle that day and draw a line to cover all the days you bleed.

If you know when you ovulate, circle that day in a different color.  Some people feel ovulatory pain or bleeding, but if not, this can be determined with further charting of fertility signs.

The comment section can be personalized to your own needs.  I use it to keep track of PMS symptoms like cramps, acne, mood shifts, etc.  I create columns of these symptoms and mark the presence of the symptom with an X. A larger X indicates severe symptoms, while a smaller x indicates mild symptoms.

I find it helpful to put all of this down on paper so I can notice patterns over time. At the end of the year, I compare this calendar with years past.  I also get a kick out of comparing my cycle to the moon’s; a mysterious connection indeed!

Feel free to use this calendar and format as you see fit…