Three years ago, I had a new baby, a new job, and a one-way ticket to France. This seemed surprisingly normal to me. I’d been in the habit of clustering major life changes. Within a few months of graduating college, I was engaged and traveling in Turkey. Three weeks after Sam and I got married, we moved to Kosovo and began work in missions. When I got pregnant, we made another international move.
This was our life: bold, adventurous, invincible.
Until it wasn’t.
Today, I have Chronic Fatigue Syndrome and spend about 75% of my time in bed. Like many people with CFS, I also struggle with intermittent brain fog, memory impairment, dizziness, muscle weakness, achiness, swollen throat, food and environmental sensitivities, low immune function, anxiety, and stomach pain.
When I really trace it back, I can see symptoms showing up as early as my pre-teens. But things started getting serious for me when we lived in Kosovo. Instead of working a normal job, I chose to manage our home and pursue writing. All my life I’d been going a hundred miles a minute, and suddenly I had a ton of time. All by myself. In the middle of the Balkans. Where everything is very, very slow.
It should have been a great change of pace. But instead, it broke something open in me. I began having panic attacks, bouts of fatigue, and crippling emotional paralysis. Old traumas flared and overwhelmed me. Some days, all I could do was binge-watch TV and then feel extremely guilty at having wasted my time. Other days, I begged Sam to take me home, even though we both really wanted to be there.
In the midst of all this, I got pregnant.
Up until that point, I assumed that this was all just a rough patch and I would bounce back. When I held that positive pregnancy test in my hand, I remember thinking, “I’m going to be tired forever.” Still, I couldn’t bring myself to slow down. After my isolating and chaotic season in Kosovo, I craved structure and work outside the home. I found a position at a missions base in France, and we prepared to move there after I gave birth.
Two months after we moved to France, I had the most intense panic attack of my life. We were struggling to find housing, getting up all night with a baby, and quickly realizing that we weren’t remotely prepared for the missions training school we were about to lead. When our missions organization required us to go to a conference (where half the staff would sleep in tents) right before our students arrived, I snapped. As I lay sobbing on the floor, the only words I could find were, “Help me…help me.”
My husband called our boss to ask him if we could stay home. Over the speakerphone, I could hear my boss say, “If she can’t do this, I don’t know how she’s going to run the school.” I immediately stopped crying. I was terrified that everyone was going to find out how weak I really was. And when they did, they’d lock me up at home with a baby, and it’d be Kosovo all over again. I dried my tears, went to the awful conference, and never had a panic attack again.
Instead, I starting getting sick.
At first, I just had the feeling of being one day away from a fever. I felt exhausted, weak, dizzy, lightheaded, hot, and foggy. My symptoms would last for days to weeks, and then be gone as suddenly as they’d appeared.
As life became more stressful, my symptoms intensified. When I made an unpopular decision to send a student home, I had crippling fatigue for weeks. When our upstairs neighbors’ shower leaked all over our kitchen, my inner ears started burning and flaking. When another student went on a diatribe about my flawed work and character, my throat and stomach swelled up for months.
After a year and a half in France, I was reacting to every stressor with new and painful symptoms. My doctor tried to treat my symptoms, diagnosing me with anxiety, acid reflux, and eczema. But nothing helped for long. I couldn’t work, could barely parent, and was losing hope that I would recover. Against all odds, I really wanted to stay in France. I loved our community and the crazy work we were doing. But when my husband—whose typical motto is “it’ll work out” —said we needed to leave, I decided he was right.
We returned to America, and I started devoting all of my time to healing. I went to doctors, specialists, massage therapists, counselors, and psychiatrists. I had thyroid tests, which found nothing. I had autoimmune disease tests, which found nothing. I had an EGD, which found nothing. I had multiple allergy tests, which found very mild allergies to mold. I tried going gluten-free, paleo, and vegan, all of which made me feel worse. I tried pharmaceutical drugs and countless natural supplements, none of which made a lasting difference. My doctors started throwing around the word “psychosomatic,” because despite my horrible symptoms, they couldn’t find anything physically wrong with me.
To this day, no doctor will formally diagnose me, but based on the CDC’s criteria for Chronic Fatigue Syndrome (CFS/ME), I have it. It’s one of the rare diseases that can only be diagnosed by process of elimination. No one knows exactly what causes it. For some people, it begins with a virus that never really goes away. Others, like me, seem to descend gradually, pushed by stress and trauma. If you want to know more about CFS, I highly recommending watching the film Unrest (currently available on Netflix).
There is no known cure for Chronic Fatigue Syndrome. However, when my doctors started questioning the somatic nature of my illness, it prompted me to do my own research into the field. I discovered that some people with CFS actually have recovered, and most of them do it by targeting their brain rather than their body. Programs like the Dynamic Neural Retraining System (DNRS) are based on the idea that the limbic system (responsible for the fight-or-flight response) is chronically stuck, resulting in a flood of symptom-producing signals in the body. In order to get the brain un-stuck, you need to rewire it with various training techniques, much like retraining a limb in physical therapy.
This is the method of healing I’ve been following for the last few months, and though I’m nowhere near healed yet, I do see incredible changes in my brain. I’m also trying new methods of therapy to deal with some significant traumas from my childhood. Reading Bessel Van der Kolk’s incredible book The Body Keeps the Score has been instrumental in helping me understand how my body has held on to trauma for years, and I am just beginning to untangle that mess.
In the last few months, I’ve also started to perceive my illness in a different light. Rather than asking, “What caused this?” or “Why me?” I’ve starting asking myself, “What is my body trying to tell me?” Just like a crying baby, I don’t believe our bodies cry out for no reason. I know now that my body has long been asking me to make radical changes to my lifestyle. For me, this has led to some serious slowing down. My wonderful husband now cares for our son full-time, while also managing the home and finances. My full-time job, he says, is to heal. The impact of this responsibility shift has been enormous.
Besides rest, I also noticed that I had a need to play and create that I’d been suppressing for years. I started painting and crafting again, and try to take time to do something playful each day. This has greatly improved my tolerance to stress, and has made me a much more attuned parent to my three-year-old.
Finally, I needed to return to nature. Years of polluted air and chemical-laden products had taken a toll, and my body needed a serious reversal. I began switching to natural products, eating fresher and more organic, and trying to follow nature’s way of doing things. This is an ongoing process for me, but I am gaining so much health and understanding from the journey.
I don’t know when or if I will fully recover, but in the last few months, I feel like I have regained myself. I feel like I can live a full life, even if I never get better. And I know that I have gained wisdom from this illness that I couldn’t have acquired any other way.
So here I am, writing again. Because I realize I have some new things to say.
Thanks for joining me on the journey.
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Photo © Elizabeth Steere.