Sometimes I can’t quite believe that I was pretty much housebound for 18 months in my twenties. Other times it seems all too close for comfort. The lack of recognition and respect Chronic Fatigue Syndrome patients receive still astounds me.
For me, like many, it was a long road to a very unsatisfactory diagnosis. For over a decade I told GPs that I was exhausted and not able to keep up with my peers. I told them I felt unwell and that I was worried. I told them I was not depressed. I told them that I was sleeping 12hours a day and was still exhausted. I told them I had to rest for days after exerting myself and that I lacked concentration and motivation. At each and every appointment I was told that my symptoms were vague and non-specific and therefore there was nothing to be done. I was told I needed to socialise less (at a point during my degree that I was a hermit), to get more sleep (more than 12hrs a day?) and that I was probably depressed (maybe, but chicken or egg?).
And so I lived in this state of exhaustion. I resigned myself to it. I thought it was just the way I am. But I could never fathom how people could just get up and do things, how they could achieve so much. Where did they get the energy? Why couldn’t I do everything? Why wasn’t I “normal”?
Things came to a head when I was writing up my PhD thesis. I’d moved to Costa Rica to write up (well, why not!?) and, within a week of being there, I contracted a really bad stomach virus. I didn’t eat anything apart from watery rice for two weeks. I lost a lot of weight and I simply never recovered my energy.
I was extremely ill. I couldn’t shuffle across the apartment without stopping to rest. I couldn’t stand in the kitchen long enough to boil the kettle. I couldn’t hold my arms above my head for long enough to wash my hair. I had to have a nap after a conversation. I had irritable bowel syndrome. I ached all over – in both muscles and joints. I couldn’t concentrate for more than a nano-second and my memory was atrocious. I was constantly hungry and loosing weight rapidly. One day the world went black and I temporarily lost my vision.
I went from doctor to doctor and had test after test. I gave countless vials of blood and saw a seemingly infinite array of “specialists”, but none could offer me any viable explanation. All told me I was “normal”.
I soon learned that being “normal” in the medical world simply means that the test needed to detect what is wrong hasn’t been discovered yet. Unfortunately, it seems that most doctors tend to listen more to the lab data than to their patients. Either that or they are unwilling to collaborate and problem-solve with the patient.
I wrote my PhD thesis and planned my wedding – I’m not sure whether this was tenacity or stubbornness, maybe a bit of both. I knew that, like most, my PhD was a huge stressor, and had been for sometime. I knew that I wouldn’t start to get better until I could put it behind me. My decision to persevere and finish my thesis was met with a lot of eyebrow raises and head shaking, but I knew having it hanging over me would be worse in the long run. That was my decision.
Back in Australia, newly married and with my doctorate (cum laude) secured, I was unable to leave the house. My GP finally stuck a label on what I had: Chronic Fatigue Syndrome. She told me there was no cure and that I would likely have it for the rest of my life – that there was nothing I could do.
For me, that meant no career, no kids, virtually no social life and that my new husband would be my carer. Clearly something had to change.
I read and researched CFS, and a friend recommended a local naturopathic doctor. Finally someone who listened to me, who didn’t tell me I was imagining my symptoms or that I was depressed. He is ordered tests and diagnosed me with dysbiosis and intestinal permeability – things that many doctors still deny the existence of despite a wealth of evidence. Together we looked at my diet and lifestyle and I began to make changes. It was slow, and it was hard, but I stuck at it. I designed my own diet, one that suited my needs and took my various nutrient deficiencies into account.
Slowly, I began to get better.
I also took a long hard look at my life, and where, and to whom, I was loosing energy. I realised I wasn’t good at looking after myself and I usually put myself last.
What’s most interesting is that my pre-CFS diet wasn’t “bad”. I’ve always eaten vegetables, nuts and pulses. I hardly ever ate fast or processed foods. I always cooked from scratch and kept myself hydrated. Clearly, a “normal” diet was not ideal for my body and was not going to promote healing and health.
I learned that doctors don’t always know best. That you are the expert of your experience and no-one should try to diminish it. Once you have found someone who will work with you, instead of dictating to you, you’re onto a good thing.
Had I not been told I was “normal” 10 years earlier, maybe the autoimmune storm that seems to be my body’s default status now wouldn’t be raging quite so hard.
After a post-doc in the USA, having a couple of kids and caring for my husband through cancer, I am now help others take control of their health as a Health and Nutrition Coach. I help people with chronic inflammation reduce and eliminate symptoms associated with thyroid disease, type 2 diabetes, inflammatory bowel disease, irritable bowel syndrome and CFS, and weight management through cancer. I always encourage people to discuss our work with their doctor. But it’s amazing how many doctors refuse to listen and instead belittle the huge steps these people are making in taking control of their health.