Tackling Invisible Illness: How Treating Mind and Body Helped Me Heal
Strapped to an IV line, an oxygen cannula stuffed in my nose, an itchy cuff taking my blood pressure every few minutes, and my torso pocked with sensors, I felt like I had hit rock bottom. My wife had dragged me to the emergency room because I could barely lift my head, my vocal cords were so weak I couldn’t talk normally, and I was too dizzy to stand. I spent nearly a full day in the emergency room, waiting for a somber doctor to pull back the curtain and give me a grim prognosis. Instead, I left with an armful of papers and a lot of people scratching their heads and shrugging. For two years no one could tell me what was happening to my body, and the problems were only getting worse. Leaving the hospital that day was the lowest point for me in the last four years of fighting chronic illness. I thought I was going crazy.
Like many of us, I once thought invisible illnesses like Chronic Fatigue Syndrome, POTS, and Dysautonomia were a farce. Then they tackled me to the floor out of the blue, and when I was finally diagnosed, my perception of illness was upended. If you want the whole story, I’ve described my struggles in more detail here.
But this journey has helped me grow, too, and after years of suffering, I’m finally in a much better place. The road has been long, but now I want to toss some hope on the table in case you’re struggling, too. Despite everything I’ve faced, and how hopeless I’ve felt, I’ve settled into a state of near-remission from my chronic illnesses. Let’s say, for the sake of layman’s statistics, that I’m about 80% better, and now I’m working on pushing through that extra 20%. After the progress I’ve seen so far, I’m confident it’s possible.
Everyone has opinions on how to tackle these bewildering diseases. Some ideas work, some don’t, and many are gimmicks. Naturopaths have led me down the path of herbs and dietary considerations. Contemporary physicians have prescribed for me a mountain of pharmaceuticals. Both have subjected me to countless scans, electrical nerve conduction tests, sleep studies, heart studies, allergy tests, methacholine challenges, and examining vats of my bodily fluids.
But in all my years of myriad healthcare visits, and despite my eventual armful of diagnoses, I never felt like anyone really knew how to help. These invisible illnesses are like zebras, after all: they could be black with white stripes, or white with black stripes. Nobody quite knows how to look at them. While plenty of organizations, such as Dysautonomia International and the Mayo Clinic, funnel money into excavating the root cause of these mysterious diseases, they still can’t be fully explained. I pressed my doctors for hope, but the more I jumped through their hoops, the clearer it became: I could wait around for someone to discover how to fix me, or I could learn how to fix myself.
The Journey
I’ve spent a great deal of time weeding through both mainstream and alternative treatments for healing my body and getting my life back, while simultaneously seeking guidance from doctors and science. While I’m not a doctor, I can state with confidence that there is no panacea for my conditions. But there’s good news, too: the world is full of holistic therapies that can boost well-being by degrees. Over time, these degrees add up. For me, these degrees of wellness built a ladder that helped me pull myself out of the ditch.
That ditch felt impossibly deep for a long time. I was diagnosed with Dysautonomia, CFS/ME, Mast Cell Activation Syndrome, POTS, asthma, and chronic allergies, which was (sadly) the highlight of a long two years of doctors telling me this illness was all in my head. Most of us chronic illness sufferers have run this same gauntlet with the healthcare system, and we’ve emerged with some emotional bruising. We’ve all been frustrated, furious, and hopeless, and we’ve swallowed our fair share of meds.
Along with these diagnoses, the doctors gave me a clear prognosis: these are lifelong illnesses. You will struggle for the rest of your life. You can imagine the psychological impact of hearing such news. I lived for years under the assumption that this was a life sentence. It may be for some, and I may always feel some remnants of these syndromes clinging to me, but after nearly losing my job from being sick, and navigating an emotionally devastating divorce, I knew it was time to reclaim my life. I wasn’t going to curl up with my prognosis and let it rock me to sleep.
Roots In the Brain
I knew from the beginning these illnesses were rooted in my nervous system. Dysautonomia is, by definition, a dysfunction of the autonomic nervous system. Every day my limbs would twitch incessantly, my skin would burn when I would towel off after a shower, my tolerance for temperature extremes was nil, and due to POTS, my heart rate would spike out of control for no reason, or sometimes even drop alarmingly. Knowing the root of the nervous system is the brain, I figured if I wanted to get better, I had to understand the lump of oatmeal floating in my skull.
Please understand: I’m not saying these illnesses are psychological. I’ve read deeply on the subject, talked to plenty of doctors, swapped war stories with fellow sufferers, and lived with these maddening symptoms long enough to know this is something both mechanical and biological. I also know I didn’t cause it. If you suffer from any of these afflictions or the fruit basket of others that go along with them, don’t let anyone tell you it’s all in your head. Because some people will try, either overtly or indirectly, to discredit what you’re feeling. It isn’t fake.
I dove deep and tried a little of everything: diet, physical therapy, massage therapy, talk therapy, red light therapy, meditation, biofeedback breathing, positive thinking, affirmations, and cleaning up my sleep habits. Some of these are fairly standard approaches, but each of these treatments also creates direct therapeutic improvement in the brain. The brain craves this kind of stimulation (including the kind it gets from a nutritious diet), and it follows the same rules as a computer: garbage in, garbage out. The reverse applies, too: good stuff in, good stuff out.
The brain is very malleable and plastic, as sagely explained in Norman Doidge’s eye-opening book, The Brain That Changes Itself. Doidge spent years researching the experiments of neuroscientists who caused miraculous recoveries from brain-based illnesses. According to Doidge, the term neuroplasticity, which is gaining in mainstream awareness, means that lump of oatmeal floating in our skulls is not static, and we can intentionally form new neural pathways within it through training and mental exercises. After reading the book I began to wonder: if these illnesses can be traced back to a dysfunction in the brain, and if the brain is plastic, then couldn’t I use the brain to heal them?
Obviously, I wasn’t the first to consider this. But the science of neuroplasticity resonated with me. Of all the therapies I had tried, those that were directly brain-related seemed to give me the best results. This seemed like the explanation I was looking for.
Healing the Mind
I’ve been meditating daily for over a year, and the changes I’ve noticed in my mind are astounding. I can focus for longer periods of time (brain fog from POTS is no joke), I’m less reactive, I feel more centered and even-keeled, and my POTS-related anxiety has diminished profoundly. As any POTS-sufferer knows, keeping anxiety at bay is almost impossible. Lying down does little to lower our inflated heart rates and sedatives just leave us feeling like bowls of runny soup. The only thing I’ve found that my heart rate responds to, without medication, is meditating.
Many people roll their eyes when they hear the word meditation, picturing smoking herbs, crystals, and chanting monks on hilltops, but these cliches are far from the norm. In fact, the best part about meditation for me is that I don’t have to subscribe to any religion or philosophy to engage with it. There is plenty of science to back up its therapeutic claims, too. One study at Emory University showed meditation reduced electrical activity in the amygdala, the fight-or-flight center of the brain. It’s also been shown to strengthen the connection between the prefrontal cortex and the default mode, which diminishes chronic, self-obsessed thinking. In other words, meditation mitigates stress in the brain, which is something we could all use.
Calming and regulating my mind has been the foundation from which I began to notice real improvement. I would encourage anyone to try it for at least a month. A great place to start is a meditation app. I recommend Ten Percent Happier, Calm, or Headspace. They do require subscriptions, but they also offer free trials.
Healing the Body
When considering the mind, it’s important to consider mind-body connection, too. Bear with me, chronic illness sufferers: I’m about to talk exercise. My physical therapist is a chronic POTS-sufferer, too, and she’s been developing programs with her clients to help treat this illness, using graded exercise programs like the Muldowney and Levine protocols. Exercise has long been touted as the first line of defense against depression, fatigue, and anxiety, conditions which usually hold hands with chronic illness. But exercise is also another cornerstone to overall well-being, even in the mind and nervous system. Unfortunately, most of us who suffer from these illnesses want to hide in a dark corner when someone mentions exercise. It’s not laziness speaking, but the inevitable days of flu-like malaise and weakness that typically accompany just a few minutes of physical activity. I’ve had my share of these experiences, too. But protocols like Muldowney’s are an incredibly slow process, which is good. The pace helped me tremendously in building exercise tolerance. I started with exercises that involved lifting my neck or swinging my arms, for example, and slowly progressed over the course of several months. I can now, miraculously, lift weights, exercise regularly, and even do HIIT training, a claim which I thought I would never be able to make again.
My physical therapist has been down similar rabbit holes of tracing her illnesses back to her brain, and she stumbled upon another therapy that has given her tremendous success: neural retraining. A quick Google search will reveal a few of these programs, each geared toward retraining the brain to make the body’s autonomic functions start behaving themselves. Two of these are the Dynamic Neural Retraining System and the Gupta Program. They seemed a little gimmicky to me at first, like companies selling dubious unregulated supplements. But when I learned that the DNRS program was created in response to Norman Doidge’s book, I gave it a chance. While the science behind neural retraining is solid (it focuses on lifting the limbic system out of a fight-or-flight lock down), the practice feels a bit foolish. I spent weeks doing things like talking to myself in a child-like manner and spending an hour a day stepping on colored dots. But I laid my skepticism (and embarrassment) aside, and the result of consciously creating new neural pathways provided me an incredible leap in my self-healing journey. It not only felt good, but positive results came quickly. Neural retraining was one of the triggers that allowed me to start exercising again without feeling sick, and I still use these practices daily.
Diving In
The road continues. Meditation, exercise, and neural retraining have only chipped at the surface of the wellness glacier for me, but have provided a strong foundation beneath my path. I’ve also had success with biofeedback breathing, which helps regulate my wild heart rhythms. Red light therapy has helped with pain and fatigue, a clean diet helps bolster my energy levels, and I go to talk therapy regularly to round out my holistic approach. None of these is a panacea, but they’ve each played a part in helping me snatch my life back from the jaws of chronic illness.
I leave you with this: if you want to heal, and I suspect you want to as much as I do, you have to start looking at your body holistically. Try new therapies, read voraciously, and commit to a new process for a healthy amount of time before you discard it. Be open and honest with your doctors, and let them know you’re willing to dive into unfamiliar territory to help you heal. In time, you may just find yourself climbing out of the ditch, too.
Resources:
Delehanty, Hugh, and Christopher Willard. “The Science of Meditation.” Mindful, 13 Nov. 2018, www.mindful.org/meditators-under-the-microscope/.
Doidge, Norman. The Brain That Changes Itself. Penguin, 2007.
