Medically Unexplained Symptoms Cause Anxiety. Not The Other Way Around.
Personal Anecdote
When I first began experiencing periodic paralysis episodes I was informed they were caused by anxiety attacks.
I believed the doctors.
Why?
Because I was incredibly anxious when paralyzed! Being paralyzed is f*cking terrifying!
It was only years later when I had a psychiatrist supporting me who told me I definitely did not have an anxiety disorder and after I had become less scared of paralysis that I realized the doctors had it wrong.
I was lying paralyzed and aware that I was not at all anxious as I knew it would pass. Tried to move, still paralyzed. It was only then that I was finally evaluated for hypokalemic periodic paralysis.
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Medically Unexplained Symptoms
MUS is a diagnosis given (primarily to women) for symptoms that do not have a known cause. Hypothetically there is nothing wrong with this diagnosis, it is a placeholder to acknowledge symptoms when no other diagnosis is known.
But in practice it is used to dismiss patients, it is used not to mean medically unknown, but medically unknowable, too hard, not worth trying. It is also used to imply that because no test result came back positive the symptoms are psychiatric in origin.
Of course, in reality, every disease was once MUS. The only thing that differentiates the two is research and doctors willing to do their jobs. Is it any wonder then that the more marginalized you are the more likely you are to be diagnosed with MUS and left without further investigation?
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Functional Neurological Disorder
FND is a label generally used to diagnose unexplained neurological symptoms. In short, it is MUS for neurologists. However, because of its specificity to neurology FND is not fully medically unexplained. Recent studies suggest that most cases of FND are likely related to blood perfusion and inflammation in the brain.
Other cases of FND may be epileptic in nature and simply diagnosed as FND as the result of the difficulty of good EEG testing. In short, many FND patients may in fact have potential tests that could show neurological abnormalities but simply do not have access to that testing. This is why similar to MUS, the more marginalized you are the more likely a neurological disorder is to be diagnosed as FND.
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Why MUS Correlates With Anxiety
Patients with MUS are known to be more anxious. The standard explanation for this is that MUS occurs because of anxiety. But here's another explanation:
Unexplained symptoms make patients anxious.
After all, if you experienced unexplained fainting, paralysis, heart palpitations, anaphylaxis etc. Would this not cause anxiety?
Indeed, it should be completely expected for MUS to cause anxiety.
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There Is No Evidence Anxiety Causes MUS
The standard evidence that anxiety causes MUS is that anxiety is more common in patients with MUS. But as shown, this isn't evidence that anxiety causes MUS. It's just showing a common sense fact that having severe unexplained symptoms makes patients anxious.
Correlation is not causation.
Additionally, in every past instance of MUS where a test or diagnosis was later developed to explain symptoms, that diagnosis did not explain the symptoms as anxiety. So why should we expect future diagnoses and tests to be different?
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Why It's So Effective
As my personal anecdote shows, telling patients with MUS that their symptoms are caused by anxiety is extremely effective. This is because MUS causes anxiety. So the patients are most likely legitimately experiencing anxiety during their symptoms.
These experiences of medical gaslighting or medical trauma when symptoms are unexplained can then cause PTSD and further anxiety. Thus the more the patient is told "it's all anxiety" the more anxiety they may feel around medical appointments making them more likely to believe the explanation.
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Solution: Admit What We Don't Know
The solution is that doctors must be willing to admit when they cannot explain a patient's problem. Diagnoses like FND and MUS are unavoidable when we simply do not have the ability to explain many medical conditions.
However, doctors should be upfront with patients that these diagnoses really do not mean anything other than "we don't know why this is happening." They should affirm that their lack of explanation is not the patient's fault and in no way makes the patient's experience less valid or scary.
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MUS and Unhelpful Anxiety
The fact that anxiety does not cause MUS doesn't mean that anxiety around MUS isn't a real problem.
Indeed as my personal anecdote also shows, it was only after I stopped being anxious during my paralysis attacks that I was able to seek further investigation and self-advocate.
Therefore, while doctors should not suggest that patients with MUS need treatment for anxiety (because doing so is almost impossible to do without perpetuating gaslighting) patients with MUS may wish to seek support for the anxiety of living with MUS.
Therapy for MUS can focus on learning to be prepared for symptoms, ACT therapy around living with chronic illness, coping skills for anxiety attacks brought on by MUS and affirmation of your lived experience.
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Hysteria Renamed
Unfortunately, while medically unexplained symptoms are an inevitability of the ever incomplete nature of science, the diagnoses of MUS and FND are in reality often simply a modern way of labeling patients with hysteria. They are given vastly more often to women, and more often to poor, neurodiverse, queer, black and indigenous people.
In a few countries including nordic countries, the diagnosis bodily distress syndrome is additionally used. This diagnosis is literally word-for-word hysteria and claims that a patient's illness is caused by their distress over "perceived" bodily symptoms. In other words, their medically unexplained symptoms aren't the problem, the problem is they are anxious about the fact they might be dying and have the gall to complain about it.
While BDS is obviously worse than MUS or FND, these attitudes that the real problem with these patients is that they complain, not that they experience severe symptoms is a dangerous and dominant narrative that has persisted and is deeply entrenched in patriarchy and ableism.
We should not be concerned with patient complaints. We should be concerned with patient suffering. Stopping patients from seeking healthcare does not make them better.
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Anxiety is a natural consequence of being undiagnosed. Doctors must learn to say "I don't know" and stop attributing medically unexplained symptoms or MUS and Functional Neurological Disorder or FND to psychiatry.
For all of medical history, women have been told that autoimmune neurological and chronic illness is "all in their head." Breast cancer was once thought to be the result of resentment towards an aloof husband. Helen Dunbar theorized a "rheumatoid arthritis personality" a "diabetic personality" and more.
Medicine is science it is constantly evolving. Ironically it is doctor's own anxiety and insecurity around not having answers that lead them to turn to psychiatric explanations for unexplained symptoms.
But this medical gaslighting is extremely harmful. Both to patients who are discouraged from seeking further answers and to medical science which must be employed to find the real causes for these diseases so that we can create real treatments.
Capitalism encourages this dismissal of patients because capitalism does not care if you suffer. GDP makes no distinction between a patient pushing through terrible migraines to work each day and one whose migraines are controlled. The problem is only those who complain or refuse to work. Silencing is just as effective a solution as treatment.
But women's pain matters. Undiagnosed pain matters. Your symptoms matter regardless of whether there is a medical explanation.
Medical sexism and hysteria are alive and well in medicine today. It's time we put them in the history books where they belong.
