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What My Doctor Didn't Tell Me

Shannon Harvey
This is a picture I don’t like to look at. This is what it feels like to have an autoimmune disease.  My muscles are aching. My joints are inflamed. I’m exhausted and worried. I don’t know when this will end. It’s not the life I’d planned for myself, and no one seems to have any answers.
Sick-Shan   I remember the day I was first diagnosed clearly.  I’d flown into Sydney to see a specialist rheumatologist. I was hoping he could tell me why I felt constantly exhausted and had painful joints and muscles. It had come on quickly and I was after a diagnosis and a prescription so I could get on being busy with my career.  It turned out this was just the first of many medical appointments over many years.   He told me he didn’t really know what was wrong with me, but suspected I had Systemic Lupus Erythematosus or SLE or Lupus. Lupus is an autoimmune disease where the immune system becomes overactive and attacks the body’s normal, healthy tissues. The doctor explained that if the disease progressed, I could end up in a wheelchair, or with organ failure. He prescribed me drugs to suppress my immune system, warned me of weight gain and suggested I might like to consider a support group, as this was a long-term illness. Over the course of a few years I was given a number of different labels and tried a number of different drugs. None of them worked. There was no known cause and no known cure.   Knowing what I know now about the role that stress and emotions plays in health outcomes, that the state of someone’s mind can even be a predictor of whether they live or die from a chronic illness, I find it surprising that this doctor didn’t advise me of the things I could do to change the outcome of my diagnosis.  
The reason this highly intelligent, highly trained and highly experienced doctor didn’t tell me about the mind body connection is because he didn’t know about it.
  “The notion that something as ephemeral, as hard to pin down and measure as an emotion could have something to do or have a real effect on something as concrete as a disease took a very long time to prove. And the reason is because it was hard to understand what an emotion is.  It was hard to see it, it was hard to measure it and until recently we didn't have the neuroimaging tools to actually see the living human brain at work, to see how the brain changes when you're in a different emotional state.”   Dr Esther Sternberg who is the Research Director at the Arizona Center for Integrative Medicine and a Professor of Medicine, at the University of Arizona College of Medicine has an interesting take on this. She believes that because aspects of mind body medicine such as emotions are ephemeral, difficult to quantify and put under a microscope, scientists have struggled to study it.  We do have those tools now. We also have the tools to see what happens when the nerve chemicals and hormones are released from the brain.  It's difficult research to do, and it needed the technologies of the modern era to develop to be able to do it well.  
There are now more than 10,000 peer reviewed academic research papers looking at the science of mind body medicine. A quick search on Pub Med (an American data base compiling citations for biomedical literature) on ‘mind body medicine’ turns up more than 42, 000 citations alone. Of course, not all studies prove that the mind influences the course of illness, or that the state of your mind causes illness. Many are inconclusive and some prove that it doesn’t. But the cumulative evidence is overwhelming. Your mind body interactions are crucial when it comes to health. Findings like this are demonstrated in thousands of studies, published in peer reviewed academic journals. And yet, in most conventional medical practices or health centres, the mind is not a component in a treatment plan. Millions of people diagnosed with chronic illnesses are being turned away from doctor’s rooms with a prescription, a bill and another appointment but not the tools they can use to potentially change the course of their disease.   If only I could travel back in time to the 24-year-old version of me in this picture and tell her what I now know.  Your chronic illness is not forever. You can get better. There is a cause. There is a cure.  The answers don’t lie with the doctors who haven’t yet heard the news.  The answers lie in modern science.

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