“I’m not saying you’re ‘MAD'”, and other lies doctors tell me – on somatic symptom disorder

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.

An image from 30 Rock. Dr Spaceman is on the phone. Caption reads, medicine is not a science

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.

An image of Shania Twain, wearing a leopard print outfit. She waves dismissal at man in front of image, then turns and walks away.
This is how I wish I’d walked out of that doctor’s office.

 

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.

Rupert the Happy Dachshund. One of our most popular items.
FYI, my hobbies include sewing, knitting, reading, selling toys for charity, blogging, and wishing I could play the violin again. Frantically searching for imagined diagnoses doesn’t make the list.

 

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).

An image of Mary Poppins rolling her eyes.

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.

An image of a woman rolling her head back. Caption reads, are you fucking kidding me?

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.

An image of an elderly woman in a hospital bed, being attended to by two medical staff.
“Madam, I’m concerned you are spending too much time thinking about your health.”

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.

A GIF of Spongebob, holding a watery jumper. Caption reads, I made it with my tears.

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.

An image of Homer Simpson making a face, and gesturing wildly with his arms. The walls are written on, with words no beer and no tv make Homer go crazy. Marge stands, with back facing image.
Go crazy? Don’t mind if I do!

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.

A GIF of Douglas from the IT Crowd. Caption reads, no, actually it's not me, it is you.
Fucking doctors.

 

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.

An image from 30 Rock. Liz Lemon is in a wedding dress, yells, what is the deal with my life?

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.

An animated image of a fox putting on his hat to leave. Caption reads, keep your chin up. Someday there'll be happiness again.
Please be right, little animated fox.

 

 

*It couldn’t be that I learnt them during my fucking PSYCHOLOGY DEGREE.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

28 thoughts on ““I’m not saying you’re ‘MAD'”, and other lies doctors tell me – on somatic symptom disorder”

  1. Siobhan, I always read your blog with great interest whether it be your sewing or your health issues. Have you been tested for Lupus? I ask because it took 5 years of ‘tea and sympathy’ with a female GP who I thought really cared about my problems, of which there are many! It was a chance visit to another GP who not only listened to me, took time to read my file in her ‘own’ time, had bloods taken weekly, when I couldn’t make it to the Surgery had Receptionists ring to ask me to try to get to Surgery to keep bloods up to date so she could monitor me. Pursued Consultant appointments, when I seemed to get lost in the system. After 11 months I was finally diagnosed. Better the Devil you know! I can understand totally why you would be happier to know your Devil, as then you know what your up against, and put your efforts into fighting it with whatever strength you have and utilize any medical drugs or natural medications available. There are few medications for Lupus. I take what is available, rely heavily on Spices in my food and have remained with the GP who didn’t give up on me and palm me off for almost 5 years like her colleague, but who continues to offer me support and very importantly, shows, that she REALLY does care, not just for me, but for ALL patients who are fortunate enough to get on her list.

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    1. Hi Janet, thank you for your kind and thoughtful comment. I am glad you have finally got some answers and have a caring GP who never gave up on your. Lupus is not a diagnosis I had considered, but after some reading I don’t think I fit any of the diagnostic criteria (no pain etc).

      Like

  2. Hi Siobhan, I read this with great interest, as I have often felt that my concerns were not taken seriously by my doctors. I have come to believe that this behavior, as you have described it ( and by my own experience) comes from the arrogance of medical professionals who want to consider themselves all-knowing. They want to believe that if they haven’t been able to help you, it can’t be their failure or lack, so it must be yours. I, too, hate going to see the doctor.

    Liked by 1 person

    1. I agree, Diane, and I have had other health professionals who put more care into their work express the same sentiment. If you don’t fit into one of their “boxes”, they will sure as hell try to force you into one.

      Liked by 1 person

  3. I’m so sorry you were treated that way Siobhan. I used to work at Arthritis SA where we included a large group of people with CFS and Fibromyalgia as our clients, and I saw what a struggle it was for them sometimes to be taken seriously (as with quite a few ‘invisible’ forms of arthritis).

    Liked by 1 person

  4. Hi Siobhan, have you sent her this text? I think you should do that and also send her all your articles on the subject and if only to educate her for the benefit of her other patients. My friend is a doctor and she says that most of the “arseholes in the industry” don’t get any feedback, so they never actually question their attitude. You said that you have difficulty keeping your thoughts straight while at the gps but what you write is very much to the point.

    Liked by 1 person

    1. I have considered making a complaint, to either her or the AHPRA. There are a few things stopping me: firstly, I have such limited energy right now that even visiting doctors and going about my daily life sucks everything out of me, and more. I fear the stress of pursuing this action would negatively affect my health. Secondly, even though I have trouble articulating myself in conversation, I did make it very, very clear that I did not wish to see a psychiatrist or investigate this diagnosis. She would not take no for an answer, and her behaviour became aggressive/bullying. Once someone like that decides you have a mental illness, everything you do is confirmation of that illness in their mind. So if I were to contact her with my complaint, it would merely be further evidence of my insanity for her.

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      1. I think a complain of unethical treatment on the Australian board of medicine is warranted. It’s people like her that shame our profession (i’m a doctor) – it’s downright rude. More than anything, a psychiatric diagnosis is , unless a classic case (like a full blown type 1 mania outburst), an exclusion diagnosis. And really , blaming the patient for the disease and not treating it because of that is a fucking disrespect. Even if it’s a chain smoker who despite all warnings prefer to continue smoking even if he has already lost 1 leg, had a heart attack and is in risk of losing the other one. Our obligation is to mitigate suffering , sometimes cure, not to pass judgement. Otherwise i’d be a lawyer

        Liked by 2 people

        1. Hahaha even lawyers can’t pass judgement on their clients! I appreciate there are doctors like yourself working very hard for the benefit of their patients and trying to do the right thing, and it is a shame that there are other GPs out there tarnishing your profession.

          Liked by 1 person

    1. Thanks for the link, it was an interesting read. I was actually considering a blog post along those lines. Sometimes I think medical doctors are the kids who are always told they are clever, and at some point they really start to believe it. Not in just their cleverness, but in their own infallibility. When a patient comes along who has a complex presentation, it is easier to try to brush them off with a psyc diagnosis than work for their patient and perhaps admit there are things they do not know.

      A very clever (in a good way!) specialist told me once most doctors want you to fit in a box, and if you don’t fit in any boxes, then they will try to assign one to you anyway! It does the patient and doctor both a disservice, especially in such a case as mine – the GP I saw was in no way authorised to force a psychiatric diagnosis, especially one about which she knew so little.

      Liked by 4 people

  5. I missed this before, the last two months have been so busy and nutso with all the holiday madness, being sick, etc. I just read this and want to scream and hit things. THIS is why it’s so necessary that we keep writing about chronic illness. This is why we have to keep talking about it. I’ve had experiences like this, but nothing this bad. I’m so sorry, Siobhan, that you’re stuck in a place without good resources or any real recourse in this case. So, so, maddening. And so completely unnecessary! For crissakes, what does a health professional lose by listening to their patient? By giving the benefit of the doubt? By just doing a little research?

    I’m going to be (hopefully!) going to Stanford this year, to get examined, and hopefully treated. They have a whole medical research arm devoted to chronic fatigue syndrome. If you want to know more about that, feel free to email me – sewbiwan@gmail.com. A friend went, and got real help. She’s feeling a lot better. I’m hoping that I’ll be able to find a medication protocol that makes a difference. We’ll see.

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    1. They wouldn’t lose anything – except perhaps their unwavering belief that nothing can exist outside their realm of knowledge, their arrogance, and their inhumanity.

      I am so happy for you that you are looking to go to Stanford this year! I’ve just been reading up on them – their research is really exciting and I like their approach to CFS as a biological illness. Fingers and toes crossed for you!

      Like

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