I’ve been wanting to share my chronic illness story with you since starting my blog. I’ve been surprised at my reluctance. It is a New Year, however, and something has aligned, helping me feel ready for a fresh start. Even so, writing my story has been more difficult than I expected. It’s made me feel more vulnerable. I’ve had to dip into the pain and bewilderment of those initial days when I had no idea what was happening. And when I was, blissfully, unaware of what was coming. I am grateful now. For all of it. For it has taken me to a better place than I knew existed. In this series I will tell you about my journey, including the insights and the epiphanies, both big and small. I would love to hear your stories too, however you may be able to share them, as this process unfolds.
My First Symptoms Of Physical Exhaustion
The onset of my chronic fatigue was so gradual that I didn’t realize what was happening.
In the first few years that I experienced the symptoms of physical exhaustion that would later become diagnosed as chronic fatigue syndrome (ME/CFS), I went through periods of overwhelming tiredness that came in bursts and lasted just a few days at a time.
One of the more attention-grabbing symptoms was how I could be so tired in the middle of the night that rolling over was effortful. During these episodes, and sometimes in between, I’d walk past my bed during the day, feel the magnets beckoning, and yearn to lie down. I sometimes spent one of my precious days off reading and resting in bed. For the entire day. Exercising didn’t seem to trigger the exhaustion and I was biking 13 miles to work some days, skiing and hiking on weekends, and dancing on weeknights. I was a bit more sore and for longer periods than I expected when I spent a day telemark skiing, but I attributed that to the fact that I was building up new muscles in a sport I was still learning.
I started referring to my symptoms of physical exhaustion as fatigue attacks, and at times felt so tired that I wanted to cry. So worn out that not much mattered except stopping everything for an evening or a weekend.
And then I’d recover and it would be as though nothing had happened.
No Clear Cause
These periods certainly caught my attention. I was a family doctor at the time and so I checked my blood work to make sure I didn’t have any of the common causes of fatigue that can sneak up on a person. My thyroid was fine. So were my blood sugars. I wasn’t anemic. My blood pressure was exactly normal. My cholesterol was low, right where I wanted it to be when low fat diets were at their peak and I was testing out the dietary changes I was recommending to my patients. I had no other symptoms during these fatigue attacks. No hints that I was fighting a cold or any kind of infection. I was very curious and noticed that I sometimes felt more tired after a difficult discussion or an interaction where I had chosen to swallow my anger rather than risk a reaction. As a doctor I had no idea what to do with that kind of information. And these incidents didn’t trigger full blown multi-day-long fatigue attacks. Mostly my symptoms just seemed to come out of the blue. And then to disappear just as mysteriously.
During this same period I had two other much more prominent symptoms.
Low Back Pain
The first was low back pain, which started very suddenly. The only position in which I was pain free for most of the 6 years it was to last happened when I was lying flat on my back. I had to make adaptations at work, including standing when seeing my patients and lying down when typing my clinic notes and supervising medical students and residents (family doctors in training) during their clinic hours. I was never able to figure out a medical cause but some years later it recurred when I worked through a very deep process around trauma I had experienced when very young. I’ll tell you more about that process in a future post.
Grief and Depression
My most difficult and gut wrenching symptom, however, was grief. I prized the connection I had with my patients but often felt as though I was causing more harm than good with the medical tests, diagnoses and treatments I had trained so hard to learn. When I helped women birth their babies I felt as though the standards of practice I had learned were interrupting an intelligent and natural process that I knew too little about. That I was somehow introducing harm based on my ignorance. By being in a profession that so often believes it knows more and knows better. And has been losing the capacity – and the time – to listen.
I noticed how on some days I felt “dead.” Numb. I was having difficulty experiencing joy even though I was working in the job I had long dreamed of. And I had no idea what it all meant at the time.
I experienced depression during my medical training and took prozac for close to 2 years, but my symptoms resolved after I finished my residency. I had attributed it to the long relentless hours and perpetual exhaustion that were simply part and parcel of training to be a physician. I’ve since learned that depression is very common among doctors and residents. I had done some psychotherapy during my residency and had a few sessions with a new therapist when I started my job as a faculty physician. It was nice to talk to someone at first, but it didn’t seem to offer much more than that. Once I started to get busy I stopped.
When my grief started up a year or so later, it felt different. It didn’t have the hopelessness and I didn’t feel the lack of control I had lived with before. Even though depression is commonly linked to fatigue I didn’t buy that my feelings of grief were at all related to my symptoms of physical exhaustion.
When Nothing Made Sense
Even though I was a doctor when my symptoms of chronic fatigue started I didn’t understand what was happening to me as the ground started to crack beneath my feet. I had no context for understanding problems for which there were real physical symptoms but no observable or identifiable cause.
As a doctor I knew of no medical treatments that I wanted to try. Mostly, I didn’t want to silence my pain – either physical or emotional – with pills this time around. And I didn’t trust that a colleague would be able to help, let alone avoid judging me or telling me it must all be in my head.
Instead I consulted a physical therapist, a rolfer, an osteopathic physician and eventually an orthopedic specialist for my back pain; tried acupuncture, craniosacral therapy and homeopathy for all of my symptoms. I tried past life regression, which had long intrigued me and saw a very kind psychic, who told me that if I was to continue treating my body like a machine it would help if I took supplements to support it more effectively.
But nothing seemed to make any difference.
It was the late 1990s at the time and I don’t think I had yet heard of chronic fatigue. Even when my aunt sent me a thick packet of papers to read about a diagnosis she had just received of chronic immune dysfunction syndrome (CFIDS – the former name for ME/CFS) it didn’t elicit any sense of recognition. All I remember feeling was overwhelm at the amount of symptoms she was struggling with and how difficult it had been for her to get a diagnosis.
When fatigue attacks happened I rested, even though it didn’t seem to make much difference. And when I recovered, I stopped thinking about it. To be honest, I mostly forgot about my fatigue attacks when they went away. I was behaving in a way that I’ve since learned is a normal response to living in a healthy body, with its practically infinite capacity for recovering from the mysterious dips and stutters that are a part of everyday life.
I was eventually drawn to a course far outside the world I worked and lived in, called Opening to Spirit. That’s when something finally started to click. I began to listen to what my soul and my body, my physical symptoms of exhaustion and my grief were trying to say. I had spent a lot of time listening to my inner self as a child. That gentle, inquisitive and earnest part of me seemed to have gone into hibernation during the intense years of medical training.
And so I was introduced to ways I could begin to listen again and be with my pain and my exhaustion.
It was as a result of this class that my teacher, on seeing the depths of grief that I sometimes experienced, strongly encouraged me to start psychotherapy. I hadn’t considered it for one moment until he urged me. Strongly. The occasional sessions I’d done here and there when I was feeling bleak hadn’t been getting me anywhere. I realized that there was a practitioner I really liked who I was interested in working with – someone who trusted the body’s intelligence implicitly. Who knew how to listen to its language of impulses, images and sensations. I had seen Kevin for a series of rolfing sessions, but what I had been particularly struck by had been his presence and the quality of his listening.
Working somatically introduced me to a whole new world. One that believes in the wisdom of the body. In the intelligence of each individual and the feelings and cravings and longings we have. Kevin’s approach attuned to and trusted the power of my symptoms to offer up clues for healing.
When I started working with Kevin I began to notice more of what was going on inside of me. To feel supported. To be investigating things “together” instead of alone. And I felt heard in a way I’m not sure I had ever experienced before.
The process of learning to listen launched me in a direction I never knew existed. It’s what started me on the path to the work I do now – work that feeds my soul – fills my heart – and makes me feel lighter. Work that eventually helped me change directions and begin to explore, understand and then find a meaningful context for so many of the symptoms I started out with. Work that enabled me to begin to heal.
I’ll tell you more about the next steps of my journey soon.