Up to 50 percent of primary care patients present with physical symptoms that cannot be explained by a general medical condition. Some of these patients meet the criteria for somatoform disorders (mental illness).
I read this when I first researched the term somatoform disorder in August of 2018 when I was diagnosed with the condition at a top hospital in Toronto. I thought it was incredible that up to fifty percent of a population has unexplainable medical symptoms, and I am now part of this statistic. What does that say about how complex the human body is? What does it say about how much doctors understand (or don’t) about the human body when they spent so many years in medical school? What does it say about how our medical system treats patients who have an unexplainable medical condition and diagnose them with a mental illness because doctors don’t know the answers? What option do patients diagnosed with a mental illness have when their potentially legitimate medical condition is discounted, and they are told nothing is wrong with them? These are questions I ask myself every day because of my and my husband’s harrowing seventeen-month experience trying to figure out what was slowly and painfully stealing my life.
When we sat in a conference room with the doctor who wagged his finger at my husband, William, and told him to 'get your wife off the medical treadmill and stop taking her from doctor to doctor,' something stirred in me. As I watched the expression on the faces of the young interns as we were admonished and told, 'people would kill for your test results,' I thought, how the heck will these young doctors, who were absorbing every word said by the attending doctor, their mentor, the man who was teaching them to be the kind of doctor he was, affect the lives of patients who will eventually seek their help. I wondered how many of their patients who will rely on their knowledge of the human body would be told they have a mental illness just because their symptoms are unexplainable? I contemplate how their lives would be affected if they present with symptoms that don't come wrapped in a box tied with a neat little bow. I know precisely what would happen to these patients who trust their doctors to help them when they are most vulnerable - when they are ill and need medical intervention.
We had access to a diagnostic and treatment support service program through William's insurance coverage at work. According to the brochure, the service allows patients access to 'specialists, resources, information, and clinical guidance … by drawing on a global database of up to fifty thousand peer-ranked specialists.' We spent weeks filling out pain questionnaires and sending medical reports, test results, etc., to this organization. Our hope was palpable because we believed; this is it! one of these fifty-thousand specialists would figure it out. I got an e-mail with the attached report from the doctor who handled my case: the Director of Education & Fellowship Training, Associate Professor of Medicine at Harvard Medical School. My eyes couldn’t move fast enough down the page as the report regurgitated all of my previous test results. According to the medical report, “the possibility of a somatoform disorder is also possible. These two conditions share many features. Both conditions (I was also diagnosed with fibromyalgia) can develop insidiously, as was the case for our patient. These pain syndromes all develop due to a disorder of pain regulation called central sensitization that results in the pain signals being amplified in the brain centers that regulate pain. The pain felt in one part of the body may trigger pain sensitizations in other areas and explains why these conditions can be baffling.” The report was thirty-one pages long, and after I read this, I stopped. I knew this doctor was wrong.
I don't have to imagine what would have happened if William hadn’t insisted that I not listen to the doctors we saw (twenty-six of them). I couldn't use either of my arms and depended on him to help with the most basic hygiene tasks like showering and getting dressed. Walking was slowly becoming a nightmare as my left leg buckled when I walked. My neurological symptoms wouldn't allow me to sleep, and for over a year, if I got two hours of unbroken sleep at night, it would be plenty. If William and I were different people, we would have slinked away to our corner of the earth, accepting my mental illness diagnosis. We would keep filling the prescriptions for antidepressants, and I would have lived the rest of my days drugged up on anti-anxiety meds to mask my symptoms. I would have had to keep increasing the dosage because when I first started taking the medication, half a pill worked until my body got used to it. William insisted we increase the dosage to a full tablet, and it worked for a while. Still, the efficacy eventually wore off, and we increased the dosage yet again to one and a half until it lost its effect also. There is no question in my mind that I would have lived a tormented, painful existence until either I ended my life because it was too much or my body finally gave up. Frankly, I find the thought of those who have a legitimate medical condition accepting their misdiagnosis without question terrifying, heartbreaking, and infuriating!
I have spoken to several people, mostly women, in person and via social media since my book was published on November 2nd, and their stories are maddening. Just like me, after many months of doctor visits, they too face misdiagnosis after misdiagnosis, even being told they need to see a "psyche," or they should have a "mental health evaluation," or worse, nothing is wrong, when they are literally bleeding from their bodies. The reason for sharing my story is I believed at the time I was writing the book that there is no way I am the only one with the condition that so many doctors missed, even discounted as insignificant and unremarkable, even though the issues were seen on my MRI and x-rays. If there are people who have the same condition as I have, and doctors are not aware of it and keep discounting it, many people will continue to suffer.
In the book, I explore more than the physical aspect of being ill as I also share how my emotional and spiritual outlook were impacted. Being sick is one thing; being told nothing is wrong when you are desperately asking for help is another. Add to that the fear that whatever is wrong will be the end of you one day, and the mental anguish was excruciating. I questioned my sanity, and, at some point, I almost believed the doctors. After all, they are the ones with the medical degrees and expertise in how the human body works. After every (mis)diagnosis, I told William that maybe that’s what it was; now we know what’s wrong, and we could deal with it appropriately. He wouldn’t relent and kept telling me not to believe the doctors because they were wrong. I consider myself more fortunate than most because William has a medical background and saw the problems on my MRI and x-rays. It's not that the radiologists didn’t see the issues. They did, but in their reports, they said they were unremarkable and insignificant. William insisted that regardless of what the radiologists and doctors said, my issues were significant and caused the debilitating pain and neurological symptoms I experienced.
Just as or maybe even more importantly, I explore the metaphysical reasons for my condition. When I could get no explanation from medical professionals (not a valid one anyway) for the pain that felt as if it was squeezing the very life from me, I found a book called Metaphysical Anatomy: Your Body is Talking, Are You Listening? Before William’s suspicions were confirmed, I was so desperate for answers that nothing was off-limits as a possibility. I explored some of the diseases listed, and it was sometimes just as scary as not knowing. It seemed as though the possibilities were endless, and this caused even more fear and confusion.
When it was confirmed what had happened to me and I read the metaphysical reason I may have developed the condition I did, I was astounded at the accuracy of what Evette Rose, the author, wrote. I remember thinking at the time, was this woman around when I was experiencing this stuff? It gave me a deeper understanding that I am much more than my physical body, and I contemplated that my condition did not just happen randomly. I then had to take responsibility for my part in what happened to me and change how I would deal with life’s future challenges. In the end, I caution those who finally figure out what their medical issue is to look at their physical existence from a holistic perspective and contemplate that we are not puppets on a string and things happen to us with no rhyme or reason. I had to change my belief system when I learned that I have a mental/emotional and spiritual body as well, and if these are not ‘at ease’, it will possibly result in dis-ease in my physical body at some point, whether I am aware of it or not. I was not aware of how much my mental/emotional and spiritual bodies were out of whack, but it inevitably showed itself when I developed symptoms. My body was talking, and I had to listen!
The moral of the story. Never take anything anybody ever says for granted, especially when it can impact your very existence and well being. It doesn’t matter who it might be, even me. Please don’t take my perspective as a given truth, do the research! There is no reason for anyone in the current times we live in to be ignorant. Information is available at our fingertips, and even though it may be daunting at times, question everything, then research! And then research some more.
I wish you well if you too are on a healing journey. Never give up hope that you will find out what the issue is. And most importantly, don’t ignore your intuition! Remember, you know your body better than anyone else!