Myth Busting
Whenever I tell someone that I have written a book about functional symptoms, I hear so many beliefs based on old ideas and frankly, wrongheadedness.
And if there is misunderstanding about the nature of your symptoms, it is going to be difficult to find a path to recovery.
It is also hard if your friends and family carry misconceptions.
I hope that the following mythbusting exercise helps both doctors and patients to accept a functional diagnosis.
Myth #1 Functional conditions are faked
There is nothing faked about a condition that arises without any control.
The majority of symptoms with no physical cause are genuinely involuntary and the approach to these patients needs to be distinctly different from those rare individuals who deliberately seek to exploit health professionals’ commitment to care.
Faked conditions, of course, do occur and doctors should be alert to the possibility of a person seeking some form of gain, such as insurance claims, attention, avoiding work etc. The treatment of the patient with factitious conditions of, for example, deliberate self-harm and the go-to symptoms of the malinger or the drug seeker are beyond the scope of this website.
But to imply that those suffering from functional conditions are somehow faking their condition is ignorant, counter-productive and cruel.
To labour the point, patients who develop functional conditions do not wake up one day and decide to disrupt their lives with some unpleasant or even disabling symptoms. Whether it is the 50-year-old businessman who has to cancel his day when he develops chest pain or the young student who has a fainting fit before an exam, accusations of faking are based a a poor understanding of the causation of functional conditions.
Myth #2 Functional conditions, because they are caused by the mind, cannot have physical signs.
Anyone who has felt their pulse rate surge, when they experience a fright or a desire, knows that physical changes happen in the body all the time in response to events or thoughts. Sometimes, our hairs will stand up on end even before we have recognised the reason.
The complex physiological responses that lead to bodily changes as a result of psychosocial stimuli are not fully understood but there are plenty of well-documented conditions where serious changes in the body arise this way. A classic example is Telogen Effluvium, when after a severe shock or upset, the patient’s hair will fall out, usually around three months after the event so the connection is not always obvious to the patient.
Myth #3 Any condition that is long lasting cannot be functional
Most functional responses, like a racing heart, are brief and self-limiting, but there is no reason why they cannot persist for weeks or even years.
For example, a non- epileptic fit can last much longer than an epileptic one and they do not respond to anti-epileptic medication. A functional cough can last much longer than a cough due to physical causes.
Tragically, some functional conditions, when treatment is refused or denied, can last a lifetime.
Myth #4 Functional conditions are not serious
It is surprising to many that functional conditions can be much more serious than organic conditions. They can be severe enough to ruin the health of sufferers. They can also ruin their personal and professional lives. Due to the misconceptions, patients with functional conditions can be ostracised, which only serves to increase their misery.
Myth #5 Functional conditions don't need treatment
Even when the correct diagnosis is made, doctors often fail to treat the functional condition, on the false understanding that it is not real or there is no treatment.
Medical training rarely incorporates the management of functional conditions. But treatment can and should be offered.
Myth #6 Functional conditions must be easier to treat (Corrollary: if the condition is not getting better it can’t be functional)
Many functional conditions respond poorly to standard medical treatment, because they are not caused by standard medical (biological) factors. But the failure to respond to standard treatment may lead some to think that the condition is more serious. In reality, the diagnosis was misguided in the first place.
Myth #7 Functional conditions are rare
Every field of medicine has a significant part of its workload determining, sometimes through very extensive testing, that a condition has no known organic cause.
Most of the symptoms listed below can be due to physical diseases or disorders, but the focus in this book will be on those conditions where physical disorders have been excluded.
Myth #8 Functional conditions can't cause real harm
Takatsubo cardiomyopathy or Broken Heart Syndrome starts as a functional disorder with an overwhelming surge in adrenalin but this can lead to heart failure and death if severe and untreated.
Non neurogenic neurogenic bladder is an otherwise normal bladder that fails to function properly, even though there is no physical explanation.
The result is urine retention which can lead to back pressure of the urine on the kidneys which then can fail.
Even when all tests suggest that the body can function normally, patients with a functional condition often cannot, leading to loss of condition, increase in pain and other limitations that can prevent a return to work, social isolation and other serious problems.
Myth #9 Functional conditions are always caused by stress/childhood trauma/sexual issues
This is another nonsense and a leading reason why sufferers reject the diagnosis. As has been repeated often, functional symptoms occur in everyone everyday. It may be true that those who have suffered much adversity in life have a higher likelihood of suffering both organic and functional conditions. However, many sufferers have no identifiable cause. It is neither necessary nor appropriate to assume any such simple cause exists.
Myth #10 Functional conditions are not contagious
Laughter is contagious. So is yawning and itching. So are mass psychosocial illnesses, sometimes referred to as mass hysteria or mass psychological illness. Throughout history, there have been reports of outbreaks of curious behaviour in groups of people, often closely knit and in restrictive or controlled cultures where other forms of expression may be unacceptable. More on this will be explored in my book.
Humans have mirror neurons. From infancy, we unconsciously mimic those around us.
Myth #11 Functional conditions only affect young girls
While it seems like women, particularly young women, are more affected, functional conditions occur in all ages and genders. Male patients, especially older ones, are often assumed to have physical causes for their symptoms whereas young girls may be treated differently.
Many people presenting to emergency with chest pain are over 50 and many of them are male. And yet a good number of these have functional pain.
Myth #12 Functional conditions don't affect people with 'real' diseases
One of the most challenging clinical encounters is when a patient has a known medical condition, who then develops either further symptoms or an unexplained worsening of their existing symptoms. People affected by pre-existing health problems are more likely than healthy people to develop a functional condition.
For example, it is well known that the degree of disability and symptoms of fatigue, pain and breathlessness following a heart attack does not correlate with the measurable degree of damage to the heart. Functional symptoms may well be contributing to the burden of illness.
Myth #13 Functional conditions do not need to be diagnosed or treated by doctors
Many doctors believe that they have no need to diagnose, let alone name or treat, functional conditions. Specialists, in particular, are trained to focus primarily on the treatment of conditions that fulfill certain evidence-based criteria and can be tested for. Having proven there is no biological explanation for the illness, there is an assumption that their job is done. The sole remaining task is how to get the patient out of their care as soon as possible. GPs are more likely to have an ongoing relationship with these patients, but again are not trained in the best way to care for them.
Myth #14 Functional conditions cannot be the cause of symptoms also caused by physical factors
There are several conditions where the cause may be physical or psychogenic. For example, Telogen Effluvium is a condition where hair will fall out in individuals who have suffered a significant shock to the system, either a serious medical illness or psychological stress. The former would be considered a physical condition, the latter a functional one. Similarly, Sinus Tachycardia can be caused by physical illness, drugs or high levels of anxiety or panic. The latter would make it a functional disorder.
The range of conditions that can have a functional element is vast: migraine sufferers know that a migraine may be triggered by physical factors such as sleep deprivation, dehydration or red wine, but stress can be a major contributor. To the extent psychosocial factors are the cause, migraine may be included in the list of functional conditions.
Fainting, vasovagal syncope in medical jargon, occurs when the vagus nerve to our heart overreacts to certain situations like extreme heat, anxiety, hunger, pain or stress. Blood pressure drops very quickly (orthostatic hypotension), causing not enough blood to get to the brain, leading to dizziness or faintness. There is usually nothing wrong with the heart or the brain, but under certain conditions, this abnormal response is triggered. Again, if there is a physical cause like heat or dehydration, it is treated by physical treatments of cooling and rehydration. If psychosocial causes are contributing, there would be a functional element to the faint.
In other words, functional conditions are complex and not easy to identify. Nor are they easy to explain and treat. It is reasonable to say that the word psychosomatic has limited use in this discussion, because of the simplistic, single cause being implied, which cannot be assumed.
Myth #15 Functional conditions only happen to the frail minded
This myth is one that shows the greatest misunderstanding about the nature of functional conditions. As has been stated, everyone has functional symptoms on a regular basis - they are a universal response to life. More serious or perpetuated symptoms can also occur in otherwise mentally sound and capable people. The exact circumstances that can lead to a functional symptom arising may not be clear, but it is not simply the reserve of mental frailty.
Myth #16 Functional conditions don't exist
Because all these myths are commonly believed, many people who have functional conditions are unable to accept their diagnosis, or they accept that other people might have a functional condition but their symptoms cannot be due to “just” functional causes. They persist in their fixed ideas about what they think a functional condition is and decide that they cannot have one.
As you can see, there are many reasons that your symptoms are poorly diagnosed so you may need to persevere to find the right help.
Next week, I will show you the six steps to restore your health. Until then, make sure you stay in the restorative mode. Best wishes.