The roller coaster of a diagnosis

clipart-roller-coaster-512x512-7c84A friend of mine in the UK, Ken Clasper has written this important blog Getting the correct Diagnosis first time. As he says, getting the correct diagnosis, of anything, is imperative and having been misdiagnosed a number of times with serious conditions, or not diagnosed for 45 years, for a serious brain malformation, I get it!

Ken was not pretending to have Lewy Body Dementia, he had been diagnosed and treated for it for many years. It is incredible to think that medical professionals refuse to believe their own colleagues, simply because someone does not ‘present in the way they think we should’!

Ken said: “I had a lot of trouble with one hospital who refused to accept my original diagnosis of Lewy body Dementia, even though it had been given to me by prominent doctors.

This is because many refuse to accept that patients are individuals, and no two patients have the same problems and symptoms, or go down the same route.

A very good friend of mine in Queensland, Mick Carmody has this problem virtually every time he sees a new doctor in a hospital. They say things like, ‘how do you know you have dementia, have you been reading up about the symptoms?’ and other offensive things like that. This arrogance and unkindness continue to amaze me, but not in a good way! Really! I have no idea why they, and many in the public, would think anyone would make up their own diagnosis of dementia. As I said to the man in the audience in Puerto Rico who told me, after I gave a presentation about some of the myths of dementia, and how offensive and hurtful it is to say to people, ‘but you don’t look like you have dementia‘… ‘And you don’t look like an asshole!’ 

Now I simply suggest to others who say that to come along and insult my neurologists and neuropsychologists. Fee free to insult your colleagues!

But on the topic of being ‘un-diagnosed’ – this is a huge challenge for everyone who has been diagnosed with a really serious and terminal condition, as the human nature of people seems to be that they then think you must have lied about it.  All I can say, yet again, is, Really? Why would anyone do that, it is simply not normal to make things up, unless of course you have mental illness or the condition that means you do make up illnesses (sorry, I can’t remember what it is called).

The emotional roller coaster of being diagnosed with a serious terminal illness, especially one that is now seen by the public as one that is the most feared disease of all, taking over from the fear of cancer, is devastating, but to say people are making their diagnosis up is more than offensive,  it is completely ludicrous. There is a lot of emotional trauma coming to terms with any terminal illness, and the myths of dementia, such as ‘we will become an empty shell’ makes it that much harder.

The other challenge most of us face is that many of our ‘friends’ simply disappear from our lives, so it is a desperately lonely experience.

Once we get used to having a diagnosis (of anything), it is equally difficult being told you don’t have it – as opposed to being told you have been cured.

They are totally different experiences; being cured or going into remission is euphoric and joyful, the other is extremely confusing, especially if you still have symptoms. And although a doctor can be wrong (?!?!?), other people’s responses can make it feel like it was you the patient, who must have been lying about it.

I know Ken felt distressed about being told his first doctors were wrong, and that he did not have LBD, as he had spent years learning to live with it; even though his doctors again agree he does.

Almost no-one pretends though… a fact worth remembering.

12 thoughts on “The roller coaster of a diagnosis

  1. Hi Kate so true it seems if you lie down and do nothing then that is what the powers that be understand is how you should be with dementia of any type but if you carry on and get on with life the best you can by changing how you cope then they think you have the wrong diagnosis. Like you say if you get a diagnosis but are then told they have made a mistake where does that leave you when you are still having the same problems.

    • Exactly Lesley… dementia is the only medical condition I know of where you are told to go home and die, getting your end of life affairs in order on the way to aged care, and the only illness where it seems, you are not allowed to do well!!! Rather a sad inditement on society I feel.

  2. Font fine here so not able to diagnose the problem. Even getting a diagnosis was a problem here until stroke. Then it gets confusing as the Clinical Psychologist from the Stroke Team diagnosed mixed dementia and discharged Maureen to the Memory Service, as they have more resources. The M S diagnosed mixed dementia and discharged Maureen as there is no treatment for the condition unless she wanted to be treated for depression. We have never met a neurologist so I’m not sure what he or she would diagnose or say about all of this!

    • Thinking of you Paul… I realise life is a bit of a roller coaster there, and don’t think seeing neurologist would in any way now (or back when Maureen was diagnosed) have made any difference to your experience.

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