WHAT’S IN A NAME?

I have always hated labels when referring to people.  I have often been known to say ‘labels are for tins not people’, but as is usually the case something happens in your life to challenge your views.

I am talking of course about children who do not have a diagnosis. They can have many symptoms but do not know the cause. They do not have a recognised ‘label’.  If you say to someone that a child is undiagnosed it does not really answer the question of what is causing the problems with that child.  It can lead to some people thinking that there can’t be anything really wrong with the child otherwise you would have been given a name for it.  It can even happen that doctors themselves or other people in the medical profession do not really take you or the child seriously when you present them with a list of symptoms but the tests come back negative. 

Filling in forms whether it be for claiming DLA or just holiday insurance can be a minefield – so like it or not, sometimes a label is needed, something that encapsulates all of the various symptoms a child might have and puts them under one category which is recognised.

The meaning of symptom and diagnosis can get confusing so according to Wikipedia (sorry could not lay my hands on my O.E.D.): -

A symptom is a departure from normal function or feeling, which is noticed by a patient, indicating the presence of disease or abnormality
Diagnosis is the identification of the nature and cause of anything

Children and adults may have a long list of symptoms but may never have a diagnosis as to the cause and it is important to keep that in mind.  It could be argued that a recognised term such as SWAN although it sounds nicer, friendlier than undiagnosed basically really means the same thing so why not just use undiagnosed?

What if you were to have all of these symptoms on a regular basis?-

• Exceptional thirst
• Dry mouth
• Frequent urination
• Loss of weight
• Weakness or fatigue
• Blurred vision

Can you imagine having to list off all of those or write them down on a form if there was no recognised collective name for these symptoms and taken separately it could be said that we have all experienced at least one of these symptoms at some point in our lives without any cause for concern.  But say to someone that you have Type 1 Diabetes or put that on your application form and you get instant recognition.

Given that, you can understand why the term ‘undiagnosed’ can sound a little weak.

I believe that the acronym SWAN (syndrome without a name) was originally invented by a member of the medical profession to describe an undiagnosed child. This was then used by the original founder of the SWAN support group (whose grandchild the consultant was referring to) and continues to this day.  Although the group itself is getting more and more recognition thanks to The Genetic Alliance and in particular the hard work done by Lauren Roberts, this is still not a generally recognised name.  

Some people have said that their child’s physiotherapist or consultant etc likes the term SWAN and will use it when referring to their child but to the outside world it generally refers to a bird!

To get back though to the topic under discussion here, I suppose the question I am asking is should SWAN become a globally recognised term and if so would it help?  I believe that some attempts were made once before by the original founder but it was treated then as a bit of a joke by the upper echelon of the medical profession. 

The more I discuss this possibility the more questions come into my mind.

A friend of mine who has a child with a diagnosed disability once told me that it doesn’t matter whether you have a diagnosis or not you still have to fight for everything.  We like to think we live in a balanced and fair society but the truth is we do not.  Shouldn’t we therefore be spending our time, money and resources trying to get all children/adults with different needs accepted by society rather than putting them into categories and inventing names?

On the other hand there are times when a recognised term other than undiagnosed, could clearly have its advantages. 

Like it or not we do feel comforted in some way by ‘labels’.  Just being told that a child is undiagnosed can sound as if what is being said is ‘we don’t know the answer therefore there is nothing more we can do’.  Parents could come out of such a meeting feeling isolated and alone.  On the other hand, if parents are told that their child has no diagnosis but this is a lot more common than people realise and it is known as SWAN then the parents have still been told the same thing but they at least come away with a sense of belonging and knowing that there are others out there.