You don’t have ‘x’

 

holy island castleYou don’t have ‘x’ – this can be good news for some, for others it doesn’t really help… Let me explain.

If a person feels ill or has a specific symptom – (the easier ones tend to be breathlessness, chest pain or cough), there are a fairly standard set of tests or investigations which can be performed to work-out what is wrong.

For example, a heart tracing, chest x-ray or set of blood tests might lead a doctor to a straightforward diagnosis; that doesn’t mean everything is great – pulmonary embolism, heart attack or pneumonia – none of those are necessarily welcome news, but at least, once you have a diagnosis, you know where you stand, you have an idea of the direction of travel.

For other symptoms, the route to diagnosis is less clear – tiredness, weight loss, lethargy; these come under the umbrella of ‘non-specific symptoms’; with them again, the patient can be fortunate and the number of investigations required is limited before a diagnosis is reached and something can be done (or not done, depending on what is appropriate).

There are a third set of symptoms that doctors struggle with – those are symptoms that have a functional aetiology, or cause. I have never really been entirely clear as to what ‘functional’ means, but usually, from what I understand, it is when a person has a set of symptoms – either specific – chest pain, cough, or more general – weakness, blurred vision, dizziness, for which no cause can be found.

If you have chest pain and breathlessness, no one wants to have lung cancer, but at least, if that is what you have, you know where you stand – you can make plans.

When there is no diagnosis, things can be more difficult.

There are some within medicine who interpret functional illness as either made-up or malingering; this, to my mind is not what functional illness represents, rather it is a set of physical symptoms – seizure, breathlessness, pain, which can present identically to the other category of disease, that is ‘organic’ – where there is something anatomically or at the very least objectively wrong – low sodium, high blood sugar, abnormal thyroid function, etc.

So, functional illness is real illness, it can present with virtually any symptom, yet the causes are far more obscure, often having their origins in emotional or psychological disturbance. (So far as we know – see below)

With these illnesses however, very often, no one is completely disease-free and this makes diagnosis and treatment even more difficult – for example, a doctor might find you have mild asthma, but you have symptoms of severe asthma; what do you have?

The inhalers help, but not completely – even stronger inhalers work, but again, not as much as is needed, and, with stronger drugs, come more side-effects, all of which make the picture of what is wrong more difficult to interpret;

There are those who believe that functional illness is organic illness and we, the physicians or scientists just aren’t sophisticated enough yet to detect what is wrong; we are those before van Leeuwenhoek, Roentgen or Crick and Watson.

Unfortunately, this does not necessarily help those people who don’t feel well, who are suffering – and can result in conflict between patients and doctors, with some saying ‘it’s all in the head’ others, ‘it’s all in the psyche,’ and yet others, ‘it’s all in the Miasma’

What I feel, patients who are living with functional illness need, is reassurance that what is wrong cannot necessarily be treated with more tests, pills or tablets – their experience is beyond that of the anti-depressants, epileptics or pain killers of today and although, there might be some sort of potential for a future-time cure, the best we have to offer today is care, compassion, support and understanding.

All of this might seem like paying lip-service to those people who feel their lives have been overwhelmed by their illness, yet, very often, this is better than letting Western Medicine run its course; that is, test after test after test, with an outcome of their either being, ‘no asthma, epilepsy or angina’, or what often happens, more tests, more uncertainty and more trials of treatment.

Suzanne O’Sullivan describes some of this well in her recent book, ‘It’s All in Your Head’ (Chatto & Windus, 2015) although I remain unsure of the book’s title or the picture of a cracked egg on the front cover.

For our patients, whether functional, psychological, psychosomatic or non-organic disease is likely, I suspect, with the shift of our society towards one in which tests become more sophisticated and the pace and challenge of life even greater, that we need a better understanding and recourse to high-quality, evidence-based support for people living with these diseases – something that is perhaps currently beyond modern medicine.

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