Imagine spending your whole life thinking you are sick, just to find out you’ve been well the whole time. If you’ve been told you have illnesses since childhood, it’s easy to believe because you are supposed to be able to trust adults, right? We know, though, that adults actually aren’t always trustworthy. The media has recently become captivated with stories about victims of Munchausen by proxy. These victims are told, usually by their parents, that they are ill and/or disabled for some perceived gain to the parents - typically sympathy or financial support. If you haven’t seen it yet, The Act on Hulu is a powerful series based on a true story about what can happen when lies are exposed and the proxy fights for their own liberation.
I’ve always found myself moved deeply by stories like this because I can relate to my voice being silenced and my reality being shaped by one singular, superior truth. I relate to the delicate, complicated struggle to find truth, to tell it, and to trust new people and realities. I know the freedom proxies can find, but I’ve always only related on some detached, metaphorical level. The concept of being stuck in illness, however, has been all too real to me. I’ve been sick since forever - chronically, acutely, mysteriously. In recent years I’ve found myself entirely disabled by my symptoms. Though I’ve tried so hard to come to terms with my condition, to believe my illnesses aren’t a death sentence, to understand beyond intellection that disability isn’t captivity, I have felt the twinge of pain in wishing my sickness, too, could be a lie.
But, unlike proxies, my symptoms are real and present and pervasive, and I’ve never faked or exaggerated any one of them. I haven’t had to. I have diagnoses given me by boarded MDs and LPCs. I have blood tests and lab results with circles and highlights and notes and recommendations written in the margins. My medical folder is a 2-inch, 3-ring binder filled to capacity with 26 years of guesses, some certain but most uncertain, to the big “why the hell do I feel this way” question. Most corners of my house are filled with pill bottles and gadgets to help ease my pain. Many of my illnesses are “invisible,” and yet they are on display over every inch of my life if you look close enough. All of these answers, though, don’t even cover all of my symptoms. I’ve had many more symptoms than answers and those symptoms have been getting inexplicably worse all the time.
If you’ve known me for any length of time, you likely know about my food allergies. It started with celiac and going gluten-free in 2007, and since then my diagnosed allergies and sensitivities have grown to over 40 in number. Having that many food allergies makes eating… impossible? I’ve done the best that I possibly can, avoiding my allergies with a military strictness. It has left me extremely malnourished, obsessive, with seriously disordered eating, and resentment beyond measure. I know there are those who “cheat” on their food sensitivities. I think they are probably in the majority willing to risk an acute tummy ache and discomfort in order to enjoy a scoop of ice cream. But my symptoms around food have never simply amounted to a tummy ache or discomfort. A food reaction for me can include any and all of the following: whole days of abdominal discomfort, mind fog and decreased brain capacity, extreme moodiness, burning and itching acid reflux that sits in the top of my throat and reaches up into my ears, tingling in my face and limbs, facial flushing and irregular body temperature, severe fatigue and weakness, actual allergy/sinus symptoms (sometimes a full blown sinus infection - thanks, cane sugar), and a myriad of lesser things. Because of histamine intolerance and a presumed mast cell problem, my reactions around food have tripled in strength in recent years and expanded to just any and all food instead of being limited to the foods on my list. Suffice to say, eating as been torturous for the last 12 years.
These food issues have been the longest-standing of my symptoms, but they are just the tip of the iceberg when it comes to what I’ve been living with. Let me give you a brief list of the diagnoses I’ve been given, which don’t even cover all my symptoms:
Celiac Disease
Food Allergies
Toxic Mold Illness
Fibromyalgia
Dysmenorrhea
Interstitial Cystitis
Obsessive Compulsive Disorder
Major Depressive Disorder
General Anxiety and Panic Disorder
Post-Traumatic Stress Disorder
Chronic Fatigue
TMJ
Chronic Migraine
Frequent Back Spasms
Asthma
Thyroid Resistance
Tinnitus
Benign Positional Vertigo
Histamine Intolerance
Chronic Yeast Infections/Candida Overgrowth
Insomnia
This has amounted to a life of being disabled and basically housebound for the last couple of years because I’ve seen a sharp escalation in my symptoms since 2016. My life essentially has consisted of shuttling between doctor appointments and bodywork and therapy and coming home to research my symptoms online and in books to make sure no one was missing anything. When my time isn’t going toward my health in some way, I’ve been glued to the couch or to my bed, watching Netflix into oblivion and despairing in my myriad of incurable medical conditions. A typical day has looked like me waking up at 9am, getting out of bed finally at 11, and not getting dressed in “real clothes.” Some days I just move from the bed to the couch and try to run my life and my tiny art business from that spot, napping between attempts at exerting any kind of energy. Some days are appointment days that require getting out of bed a little earlier but never wearing the real clothes. Evenings are the worst, and most of my time goes to laying on an acupressure mat, stretching, taking long baths, drinking herbal teas, nursing whatever daily reaction to food and histamine I am having, and obsessing and panicking about every little somatic experience that could mean being extra sick for the next few days. Housework basically doesn’t get done, which only serves to make me feel worse about my condition and my abilities and my life. Except that I haven’t felt like I even have had a life in a very long time. Between moving to Nashville, being exposed to toxic mold, moving again, seeing my long list of symptoms and diagnoses get longer and more and more of my time go to appointments to keep up with my health, I have not had the time or energy to make friends or build any real life-giving structure around my existence here. Not to mention, I have been in one long, terrible, irritable mood for the past few years. So day after day I’ve woken up to my own little harsh (and equally boring) reality, knowing I will face it alone today and the day after that and the day after that.
Or will I?
A month ago I visited another new doctor here in Nashville. I went into the initial appointment with the usual apprehension and mistrust and gloom of wondering why this one would be any different than all the rest. Except this time I knew why it would be different than the rest. I knew this doctor had a very different specialty. I knew that if she could answer the Big Question of my health issues the way I hoped she could, then everything would be different. I also suspected that if her answer wasn’t the right answer for me, then I would be done looking for any more answers for a very long time. I was in the middle of serious burnout, and I barely had it in me to show up to the appointment. But I showed up. I showed up with that familiarly terrifying pins and needles sensation running through my body, head on fire. I handed her my filled-to-the-brim binder of lab tests and history and half-assed explanations. I explained my experiences and answered her questions. She flipped through the pages of numbers and abbreviations I’d memorized for years, and then she looked up and said the exact words I’d been holding my breath waiting for:
“You’re not sick.”
It was my movie moment - the one that I had seen all of these pretend proxies in film and television get during the climax of their story tellings that had made me feel so simultaneously hopeful and destroyed. Of course, no one in my life has Munchausen, and I am not a true proxy. That is not my story. In some ways I consider myself a proxy of the medical system, of a network of doctors and practitioners who knew no better than to hand me diagnoses even they only half understood in order to keep me coming back into their care. My story, however, can be explained now in just one diagnosis: TMS. Tension Myositis Syndrome is a term coined by Dr. John E. Sarno to describe a condition he spent his life researching. The gist is that he sees chronic pain (acute or widespread) and pain equivalencies of the nervous system to be psychogenic. This is kind of a fancy way to say that the symptoms experienced by people with TMS are caused by stress in the brain. It’s understandably risky to tell anyone that their problems are “all in their head,” but that’s not what Sarno means. His work validates the very real and terrible symptoms experienced by those with TMS, saying it’s not all in your head but all in your brain. In these cases, there’s no true structural damage in the body capable of causing the pain and pain equivalencies. Rather he sees the pain as a defense system put in place by the brain because of some perceived danger or threat. Feeding this pain cycle with continued fear, attention, and treating the symptoms obsessively, which is inevitable, only serves to validate and strengthen the neuropathways causing the pain in the first place. The result is a long list of essentially unexplained symptoms and chronic pain that may move around the body but won’t go away.
So the cure for TMS? Believing the diagnosis. It really is that easy and that difficult. Dr. Sarno and his successors have developed many programs around recovering from TMS that focus largely on understanding the diagnosis and replacing everything we thought we knew about our condition with the truth about what’s really happening. Sarno says that for most the root of the issue is rage, wherein the brain senses it’s too dangerous to feel anger and converts that unconscious feeling into something it deems more manageable like back pain. There are and have been many who make the connection between trauma and the body, and the work around TMS agrees with that mindbody connection in a way that may seem extreme but is really very simple and effective. Many who are recovering from TMS recover completely just by reading one of Sarno’s books, some take an extra step in using a workbook or mobile app, and some need extra help in therapy working through unconscious emotions to release suppressed anger and sadness. All of this work is aimed at developing a new relationship with our symptoms, and that ultimately requires those recovering to stop their usual treatments and to add back in those activities they’d been conditioned not to do. This shift is not a leap of faith. It’s a leap of understanding - understanding what is really happening in the brain and body when the symptoms come up in order to develop an authentic indifference to the pain so that the brain learns these conditioned responses aren’t necessary. All of this self-soothing can be accomplished with one repeated refrain: you are safe.
My process started with me reading every book. I mean I’ve really read every single book on TMS. Every. Single. Book. And then I read all of the articles and watched all of the YouTube videos and lectures. I have used the Curable app and worked through one of the workbooks. What has worked the most for me is the information. I’ve done a lot of work around my trauma already, and that is work that I will continue. But it seems that because I’ve done so much of that work, recovery has progressed so, so quickly since my diagnosis. I have already stopped going to all of my appointments. I’ve stopped taking the supplements and the pills I was using to rescue me from my pain. I have reintroduced every single food on my long list of “allergies” (except gluten - celiac disease isn’t TMS). I have started doing housework as it needs doing, walking to get coffee instead of driving, using my time to move my body and feel it moving without fear. I’ve seen at least an 85% decrease and disappearance of symptoms just in the month since my diagnosis. My time not longer goes to what I thought was me taking care of myself. Instead it has been going to figuring out what the hell I want - to eat and out of life. These are two very overwhelming questions because I’ve never had the kind of choice I have now. I’ve always only ever eaten out of necessity. I don’t know what I like at all. I do know I like cheese, though. And I’ve never truly felt the need to figure out what to do with my life long term because I felt I’d only ever have a life limited to my reach and energy as a chronically ill person (if I stayed alive long enough in it).
I know now what I could have only imagined before: how it feels to be told your whole life that you are sick, just to find out that you are actually well. Now when I watch those movies and shows, I get to relive my own movie moment instead of despairing that it will never happen for me. I am safe. There is nothing wrong with me. I am not sick.
___________________________
I am not a doctor. I don’t know if you have TMS. If you think you might, the best resource I can offer you is tmswiki.org because it’s the Mecca of information and resources and stories of recovery - and it’s FREEEEE. Another awesome accessible resource is the Curable app that you can get on your phone. It’s not free, but it offers a free experience of the app before you subscribe and pay. If you do think you have TMS, you don’t actually need to see a doctor or get a diagnosis in order to get better, but the wiki does offer a list of doctors by state.
