October is Dysautonomia (dis’-oughta-know’-me-uh) Awareness Month.
Dysautonomia is the umbrella term for dysfunctions of the autonomic nervous system; invisible disabilities that can impact your heart rate, blood pressure, breathing, temperature regulation, and gut function and health.
The top three causes of dysautonomia are COVID, Sjogren’s disease and diabetes. The most frequently diagnosed form of dysautonomia is postural orthostatic tachycardia syndrome (POTS).
Like Sjogren’s disease, dysautonomia is medically neglected. Patients who have dysautonomia frequently have their symptoms psychologized as anxiety and depression or are dismissed with a diagnosis of functional neurological disorder (FND), which is the modern-day equivalent to being diagnosed with hysteria.
Medically-neglected communities like those suffering from Sjogren’s and dysautonomia are vulnerable to predation.
People living with invisible, unpredictable and hardly known conditions, such as dysautonomia and Sjogren’s, have little control and limited options for how to manage and treat their conditions. They struggle to get adequate medical care, are often harmed by the healthcare system or are shamed for needing medical care.
The prevalence of myths and misconceptions and lack of medical education on conditions like Sjogren’s disease and dysautonomia leave patients unsupported, abandoned, flailing for help, and burdened with shame and grief. They become desperate for support and relief of any kind, even if it’s extremely costly, leaving them vulnerable to wellness grifts such as buying expensive supplements and treatments that claim to address the “root causes” of their complex illnesses.
The problem with the root-cause approach is not so much that addressing the root cause is wrong, it’s that a false root cause is often presented as a true root cause. The wellness industry frequently misleads consumers into thinking that symptom management through diet and lifestyle is addressing the root cause of their disease when it’s not.
For example, there’s a functional medicine practice in the UK that advertises a “Healing with Sjögren’s Naturally” program that is “focused on addressing the underlying root causes of Sjögren’s, rather than just endlessly managing the symptoms” so you’ll, “Feel more in control of your Sjogren’s.
Nobody knows what causes Sjogren’s disease, so what root causes of Sjogren’s are being addressed? What’s being peddled here, for $399-$999, is information and advice that is freely available from www.sjogrensadvocate.com, online patient communities such as the Sjogren’s Smart Patient community, and patient experts in the Sjogren’s community, most of whom are listed on the Hidden Illness and Disability Directory of Entrepreneurs and Nurturers (HIDDEN).
More importantly, Sjogren’s disease is a serious disease that, when left unmonitored, can be disabling, debilitating and even fatal. Addressing lifestyle and diet are important, but comprehensive monitoring of Sjogren’s disease by a knowledgeable rheumatologist is essential.
* What’s the root cause of autoimmune disease?
Autoimmunity is multifaceted and is usually initiated by a confluence of multiple genetic and environmental factors. We don’t know what drives autoimmunity but we do know that many factors contribute to it. Addressing environmental contributors to autoimmune disease, such as stress, nutrition, sleep, exercise, pollution, etc., will reduce the burden on your body and, therefore, benefit your health.
Living with complex, chronic conditions requires both medical monitoring and management and appropriate diet and lifestyle measures.
While addressing diet and lifestyle benefit your health, they rarely fully address the underlying cause of a complex, chronic condition. For example, neurogenic orthostatic hypotension (nOH), a form of dysautonomia, can be managed by eating and drinking lots of salt and frequently lying down, i.e., diet and lifestyle changes. However, the underlying cause of nOH, Sjogren’s disease and its accompanying immune dysfunction, are not addressed by these diet and lifestyle measures.
The danger with choosing only diet and lifestyle measures to manage a complex condition, such as dysautonomia or autoimmunity, is that you might be cheating yourself of the opportunity to slow damage and maintain, or even improve, your quality of life.
* What is the role of nutrition in human health?
Nutrition is the process of providing or obtaining food rich in the nutrients (or building blocks) your body needs to function properly, repair, and grow. Ideally, most of your nutrients come from minimally-processed plants and animals, i.e., whole foods. But whole foods may not supply you with all the nutrients you need in the quantities in which you need them.
Supplements are intended to be used to supply your body with the nutrients it needs but is not getting from the food you’re eating. Supplements are not intended to replace food or medication. A dried green powder supplement cannot substitute for the health benefits of eating fresh fruits and vegetables. A turmeric supplement cannot replace Tylenol (acetaminophen).
* Gut health and diet
Your gut, “from gum to bum” as Cristina Montoya, a registered dietitian and member of HIDDEN says, is one long tube where food is broken down and absorbed.
It’s a complex system and there are many components involved in keeping it functional and healthy. Your autonomic nervous system controls the movement of food through your gut. At various points, different kinds of fluids and digestive juices are mixed in with the food to break it down.
Mucus lines the length of your gut to lubricate the passage of food and to trap and prevent foreign particles from entering your blood stream. Bacteria, viruses, fungi, and other microbes live within and on your mucosal lining. You’re in a relationship with them and they influence your health.
If any of these components malfunction or stops functioning, your gut health and digestion are impaired. Chronically poor gut health leads to nutrient deficiencies and malnutrition.
When you’re sick and malnourished, improving your gut health, eating nutritious foods, and supplementing your diet to replete your nutritional status absolutely will improve your health. But, unless your condition is the result of a nutritional deficiency, proper nutrition and supplementation can only do so much and are unlikely to appropriately manage your condition, let alone cure you.
In fact, inappropriate nutritional supplementation frequently does more harm than good. Unlike drugs, supplements are only lightly regulated, if at all, by the FDA, and may not contain what they claim to contain, may be contaminated, and may provide nutrients in forms and concentrations that aren’t beneficial to you. Importantly, many supplements actually negatively interact with medications you may be taking. You can do serious damage to your liver, kidneys, and your overall health, and bank account, with inappropriate supplementation.
It is tough to live with a complex, chronic condition, especially one that’s medically neglected, but that’s all the more reason to be pragmatic and vigilant.
Ultimately your health care is your responsibility. Do your research, don’t be gullible, and if you live with a complex, chronic condition and could use some support, let me know at bexiphd.com.
— Bexi (Rebecca) Lobo, Ph.D., is a nutritional biologist and biochemist.