Content warning: contains GIFs, discussion of abuse and gaslighting
If you’ve been following along with this blog so far, you will know that my already poor health has taken a sharp turn for the worse. The decline is so sudden, dramatic and long-lasting, that I have started to consider that there may be some underlying medical condition affecting my health other than ME/CFS. As it had been some years since a full medical review, I decided to try a few different GPs in town for new ideas.
This decision was not taken lightly. I dislike going to the GP so much that I only make a handful of visits a year. The sensory load in doctor’s offices is so bad, my ability to make meaningful conversation, especially when recounting health events, is so affected, and my capacity to leave the house so limited that I avoid going to appointments as much as I can. But I was so desperate for answers, and so determined to do the right thing by my health, that I booked an appointment with a new GP.
The appointment started with promise: she had come highly recommended, and suggested seeing a travelling neurologist. However, it took a troubling route when the GP started sermonising about the role of stress in illness. After grilling me about the stresses I had experienced as a healthy uni student (spoiler: there were none), she concluded that I really needed to see a psychiatrist for a diagnosis of somatoform disorder, or as you might know it, hypochondria. I left, and burst into tears.
Upon reflection, I began to realise that the GP had been gathering evidence to support her already formed theory throughout the appointment. She scoffed at my use of technical terms such as ataxia and expressive aphasia, as if I’d picked them up in my reading and decided to apply them to myself.* My reluctance to know my weight became evidence of a latent eating disorder, rather than the decision of a woman who was weary of society’s obsession with kilograms over happiness.
When she quipped, “so what are your hobbies, other than looking up things like ‘dysautonomia’ and ‘sensory processing disorder’ on Google?” (air quotes included), I should have known that she did not see me as a human being. Rather, I was a collection of symptoms procured from online forums and Facebook pages, held together with a toxic glue of anxiety and hysteria. It did not occur to her that I was a person, just like her, in pain and desperate for answers.
A somatoform disorder, now known as somatic symptom disorder, is a category of mental disorders in the DSM-V (Diagnostic and Statistical Manual of Mental Disorders). They involve a patient experiencing one or more “somatic symptoms” (any of a broad range of symptoms such as pain, weakness or shortness of breath), with “excessive thoughts, feelings or behaviours” regarding the symptoms, such as disproportionate anxiety. Unexplained symptoms are not considered cause enough for a diagnosis. It is treated with psychotherapy to “correct” the underlying, dysfunctional illness belief.
It is a diagnosis which should not be made lightly, or to explain away symptoms of a yet-undiagnosed illness. Careful observation from a team of trusted health professionals, including a psychiatrist, is essential. It is not a suggestion which, as in my case, should be made by a new GP who had barely spoken to me for 10 minutes, and who was so unfamiliar with the disorder it took her several minutes to recall its name (which, as it turns out, was incorrect).
The inclusion of somatic symptom disorder in the DSM-V was a controversial decision. Allen Frances, chair of the DSM-IV task force, warned that the DSM-V definition of somatic symptom disorder “may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making.” His concern was supported by field trials, in which 15% of patients with cancer or heart disease, over a quarter of those with irritable bowel syndrome or fibromyalgia, and 7% of the healthy population were diagnosed with somatic symptom disorder.
Others are concerned that somatic symptom disorder pathologises normal reactions to chronic illness. Who determines what constitutes “excessive preoccupation” and “excessive time and energy devoted to these symptoms or health concerns”? Is it the cancer patient who has to take months off work to attend medical appointments, chemotherapy and radiology? I’m yet to meet a chronically ill person who isn’t worried about their health to some degree.
It is evident that in the wrong hands, somatic symptom disorder can be used as a catch-all, a convenient way for a prejudiced medical practitioner to punish their patients who are already straining under the burden of complex medical conditions. To falsely accuse a patient of having the disorder is a way out, a victim-blaming method which absolves the medical practitioner of actually pursuing treatment for their patient’s symptoms.
Worst of all, a somatic symptom disorder diagnosis is just another tool health professionals can use to gaslight their patients and make them believe their experiences are not real. The doctor uses their authority to convince their vulnerable patient that their symptoms, are, in fact, the product of a delusional mind – a convenient diagnosis which neatly abrogates the doctor of all responsibility in regards to their patient’s care.
This discussion is not merely academic. Already, a child has been locked in a psychiatric hospital for over a year, cut off from her parents and denied an education, after her existing diagnosis of mitochondrial disease was rejected in favour of somatoform disorder. After a legal challenge, and 16 months of incarceration, she was returned to her parents’ care – still so ill she required a wheelchair.
I have already written about gaslighting, being accused of hiding a mental illness, and having the message reinforced by health professionals that my symptoms are not real. Naively, I hoped that episode of my life was over, and I could seek medical investigation without being tarred as “mad.”
But despite the insistence of this GP that “I’m not saying you are ‘MAD'” (again with the air quotes), that is exactly what happened. She took my initial confession about the challenges of being viewed as a ‘hysterical mad woman’ by the medical profession, and used it against me in a final indignity. I felt like I’d been punched in the gut.
The process of gaslighting is traumatic enough to endure once, let alone every time I go to the doctor’s office. I only feel I’ve started to recover, and regain some sort of mental equilibrium, before being plunged into confusion and despair once more. The continual questioning of my own sanity does its own, terrible, psychological damage, and the retraumatisation takes me to a place far from healing.
Being accused of madness by an authority figure in whom you have placed your trust is like having your heart and mind turned inside out, and everything you rely upon turned to dust. As much as I am cognisant on a logical level that my experiences are real, having another version of reality continually enforced upon me makes me start to question whether I truly do know what is real, and what is not.
Sometimes I think the nurses in hospital were right, and I am just a hysterical, attention-seeking faker. Perhaps I really can do the things I think my body will not allow me to, and instead it is my mind’s distorted perceptions holding me back. Or maybe I should believe this GP, and admit that the past six years have been some sort of elaborate charade, acted out for the benefit of doctors whose attendance I so desperately crave.
In my darkest times, I fear that I am so enmeshed in my psychosis, that I cannot even tell that I have lost my grip on reality.
Of course, none of these thoughts are true – they are the product of spending nearly a quarter of my life being told by medical professionals, who I used to believe and trust implicitly, that my experiences are not real. My doubts are real and troubling symptoms, not of any disease within myself, but of a medical profession who refuses to legitimise the lived experiences of young women, and who would sooner brand them as hypochondriacs than take their concerns seriously.
So where do I go from here? I am certainly reluctant to try any more GPs. As someone who loathes conflict, I found this particular GP’s aggression when I expressed my disagreement terrifying. Despite my repeated assurance that I thought seeing a neurologist was a great idea, she twisted my words, insisting that my reluctance to see a psychiatrist meant I really did not want to see a neurologist either. She accused me of seeking diagnoses, and of enjoying my myriad of debilitating symptoms. Her words were spat at me, as if she had cleverly caught me in the act of deception: I must be pleased with my CFS “model” as it was “clearly working so well for [me].”
The gaping chasm separating me from recovery seems wider than ever. I live in a small town, with very few medical options for the chronically ill. News travels, and I am afraid every GP in town will soon be worded up about the hysterical young woman who just wants attention. I now fear that I will have the label of somatic symptom disorder thrust upon me by every medical professional I visit, which, at its basest, is just a relabelling of hypochondriasis.
I will seek a referral to a neurologist from my current GP, who, to her credit, has always taken my concerns seriously and never once suggested that my symptoms might be psychological.
For now, I need to touch the grainy wood of my desk, feel the warmth of the salty, summer air in my lungs, and taste the sensation of piping hot tea in my mouth. For these experiences are real, like my symptoms, and everything I have been through these past size years. I cling to these reminders like a buoy in the tide, against a tsunami of those who would attempt to erode my sense of self.
*It couldn’t be that I learnt them during my fucking PSYCHOLOGY DEGREE.