The ‘joy’ of disbelief and dementia…

imagesAfter almost 40 years of doctors telling me there was nothing wrong with me, a neurologist diagnosed me with an Arnold Chiari Malformation Type 1, a rare brain malformation requiring brain surgery, that … yes, wait for it … I had been born with. So, all those years I had NOT been “imagining the symptoms” or a “hypochondriac”; the severe headaches, the dizziness and fainting spells, the parasthesia in my arms and legs, they were all REAL.

And now, after being diagnosed by more than one neurologist with younger onset dementia, and having annual reviews that continue to say the same thing and are simply charting the progression, many doctors (and others) state they don’t believe there is anything wrong with  me. The arrogance is extraordinary, and the insult they are making by doing this, about and to their own colleagues, and to me is extraordinary.

Although perhaps I should add a rider here. There are I am sure many doctors who are brilliant at their profession, and would not behave in this way; I’ve just not met many of them. And also, my general practitioner, neurologist, Neurophysiotherapist, physiotherapist, and physician are all, now, extremely supportive.

So when we are sick, and know we are sick, if medical tests cannot prove it, or more to the point, if the appropriate tests are not prescribed by the doctor to prove it which was in fact what happened to me, we are told there is nothing wrong with us (if I had been referred for an MRI I would have been diagnosed with the brain malformation I was born with); then when a doctor or doctors diagnose us with dementia, if we don’t publicly present at end stage, other doctors tell us there is nothing wrong with us, and that our own doctor must be wrong… what is it with this group??????

Just like nausea or chronic pain, the symptoms of dementia are not always obvious. You can feel like vomiting, but no-one can see that, and generally, it is not ALL of the time. If you are in hospital and you say you feel like vomiting, you are usually prescribed and given an anti-emetic. If your symptoms of dementia are not obvious, and you are not in fact, dribbling down your shirt or unable to speak, then others don’t want to believe you have it. Not even people with dementia in the later stages have the symptoms ALL the time. They may get worse with change, or tiredness, or some medication. Many of the symptoms may not show up at all on some days, and this does not mean people with dementia are lying about it, or have been misdiagnosed.


A few of days ago I received this comment from an online friend with dementia via the contact form on this blog, although I have kept her and the doctors name out of this blog for obvious privacy and ethical reasons:

Comment from online friend: “Kate, I need a bio – certain it’s here but my abilities are a bit limited. Yesterday upon visiting my specialist, I told her about you and your accomplishments.  Her response was ‘then she certainly does not have dementia.’  I would like to email her clinic your bio.”
I replied to her with this: “Wow, how insulting to her colleagues, who diagnosed me, whom I got second opinions from, and my local neurologist who assesses me each year as I deteriorate!!!!!!! Oh, and very insulting to me. Please feel free to print off and give her, or email my response. Extraordinary!!!!!!!!!!!!!!!!! But then again, nothing surprises me about the arrogance (and sometimes ignorance about dementia) of that profession…. My bio is on my blog, but my footer briefly says it too. Take care, oh, and I¹d love to know who this insulting doctor is too!”
Perhaps I was a bit heated in my response?
Anyway, she replied: “Thank you Kate.  I will print this off and take it to her office.  Although this is just the kind of slap in the face those will dementia live with, this may be the straw the breaks the camels back.”
It never ceases to amaze me how cruel and insulting others can be, especially to people with mildly or completely invisible illnesses. My blog this week about some of the strategies I have to use was partly a response to this, and this lovely blog reader is going to send that to her specialist. On another offensive note, my online friend also has dementia, and has completed studies recently, and is often told, “oh, but they must have made the course easier for you”. From personal experience, I know courses are not ‘dumbed down’ for us, and I know well the additional challenges our disabilities present when studying. Congratulations, not a slap in the face for her would have ben preferred…
How offensive and insulting for her, no consideration of the immense effort she would have put in to complete her course. I know from experience how much effort is needed just to read and write, and the end result does not in any way show that.
As we all need to say, onwards and upwards through the fog, and let’s now add to that line, the insults…
This is of course, another reason why it is so imperative we have a public campaign and get involved with things like

Where Did You Go? Film, Documentary and Campaign on Dementia to start teaching even the doctors it absolutely possible for many people with dementia, to live well with dementia.

If we are doing well with cancer, people including doctors say well done, if we are doing well with dementia, many people, including doctors say or imply we are lying, or that our doctors are wrong… WTF??? And many of these same people believe in a God, that they cannot prove exists.

There really is no joy at all in being disbelieved; it is quite simply, offensive and hurtful.

20 thoughts on “The ‘joy’ of disbelief and dementia…

  1. As a volunteer with Alzheimer’s Aust Vic, I participate in a program where we ‘role play’ for final year medical students. This is a three hour session where they learn some basic facts about dementia; what the organisation offers people living with dementia and their carers – and then the volunteers bit! Two of us who have previously cared for someone living with dementia take on the role of a person who may have early signs of dementia, and the other either a family member, a friend or neighbour who has noticed and is concerned about the person. We act out a scenario that usually happened to us. In my case it took the GP 18 months to refer my mother for neurological testing insisting her changes were due to ageing and that my sisters and I did not understand the ageing process! Following the role play we tell our ‘story’. This is a very powerful and emotional session and I hope is something that will remembered into the future by these students. Few, if any, say they intend going into general practice – all are gong to specialise! It is explained that even within a speciality they will come across patients who may have dementia!


  2. Hi Kate, this doesn’t only happen with dementia I was told for nine years that a problem I had was all in my head until I saw another consultant who diagnosed my condition unfortunately by this time my condition couldn’t be cured and I required major surgery. Now having dementia this other condition will be an extra worry for my family to deal with when I am unable to look after myself. It takes you a long time to accept your diagnosis of dementia and then after 7 years they tell you they have got it wrong, what’s going on in the medical profession.


    • Hi Lesley, sorry you have had a similar experience too! I suspect if this blog went on the front page of every newspaper around the world, there would be millions of us! Sadly… hugs xx


  3. Signs of our times no Kate? The true ignorance of Allopathic physicians is truly stunning. I cannot blame them personally but rather the controlled med school curriculum that is filling their heads with untruths that pushes them towards Pharmaceutical drugs as the answer to the worlds ills..So depressing. It makes us realize how much further we have yet to go to evolve to the next level…It is similar to mental issues that cannot be seen or touched. I know I have struggled for years with the limitations my childhood chaos & trauma placed in my life but try convincing the Govt your issues qualify for funding to aid in day to day activity. Nope. There is nothing wrong with anyone’s head. We cut off heads from bodies when we sign up for insurance. Doesn’t cover the head. Like heads are not part of the human body? It is all so warped and I just pray I have the patience to see the world shift and consciousness rise to a new level of understanding and compassion. Hang in there friend. By the way I wanted to make sure you have my new blog address. I haven’t seen you around( which is fine) I just didn’t want you to think I wasn’t writing anymore. Be well friend and much love to you…VK ❤


  4. Hi Kate, for someone not directly involved with the condition this paints a scary picture. I have a long term physical illness misdiagnosed for a number of years and the relief, mental as well as physical relief from receiving a simple medication once we knew what we needed to treat, was incredible. Brain conditions are inevitably harder to diagnose of course and we are learning more about it all the time, but even so your and your readers’ experiences are surprising.


  5. Hi Kate…Thanks for highlighting this. Chris also had problems getting a diagnosis as was told ‘we don’t like to diagnose young ones with dementia, so we will treat you for depression.’ Imagine telling that to a cancer patient. Unbelievable!…But of course we wanted to believe it . The Dr said ”’you look depressed. you sound depressed and you are depressed. Well what would he expect when you are at the Drs worried about your cognitive function. I had to fight to have a SPECT test done and that took 7 more months.


  6. Hi Kate,
    I know this feeling only too well, and after my last consultant recently moved to another hospital and I was left with someone who did not believe the two previous diagnosis of Lewy body dementia, which left my wife and I bewildered and confused.
    After going to a balance clinic for possible parkinson’s the consultant there said that he found the refusal to accept my diagnosis as a shock and could not believe why this lady was rubbishing my diagnosis, when she was not a neurologist.

    I am now hopefully being refered to a specialist to get the diagnosis confirmed.

    I was left totally devastated after living with this illness for all these years and unable to move on with my life. Now I hope that things will be able to settle down again after my appointment is confirmed.
    It seems that this happens to many people if they do not fit in with the written models in the text books. A good model of this is Christene Bryden who is still going after all these years. As the consultant said yesterday, if you keep your brain active it will fight to remain alive.
    As he said, you either Use it or Lose it. He used that well known reference we all know so well, and he was a young doctor specialising in neurology.
    I know that after this I can get back and write about my problems in my blog, as it will hopefully help others
    Thank you for giving me my confidence back again, even though I never wanted this illness in the first place.

    Best wishes


    • Thanks Ken… John Sandblom said in an email today, it is exactly what so many people with dementia talk about and think! So sorry to hear of your trauma over the last few weeks or months… none of this is easy. hugs to you both xox


  7. Kate I know what you are going through I was told that I was suffering from stress at a least stressful time in my life. No one wanted to believe me they wanted to prescribe anti depressants which I refused. It was only through persistence that I finally was diagnosed with YOFTD, I wanted to go back and tell the pompus little p***k of a resident that his knowledge of this is completely off the chart wrong and he needs to go back to med school and redo his courses. I found it very frustrating fro my GP to the neurologist who were all wrong and a MRI and a PET scan proved this, Good on you for sticking to your guns and proving them wrong.I am of course concerned about the upcoming operation which I know will be a complete success. Thinking of you. Mick and Sue


    • Hugs to you both too… so many people with dementia have EXACTLY the same experience as we’ve had… and until we start speaking up for better diagnosis and treatment, nothing will change xx


  8. Kate I received a private message this week too, from a lady now having her YOD diagnosis retracted after 7 years. It’s a very difficult situation and I feel so frustrated on behalf of all people experiencing this. On a much smaller scale I remember enduring labour stoically, only to have numerous others conclude (assertively) that I had an easier time than most (as evidenced by my quiet demeanour). Right, next time I’ll scream and get some other label!!!! Keep fighting, many voices singing from the same hymn book will get there in the end. x


    • Oh dear… so if you don’t scream in about, it is easy for you!!! My goodness, people do love to judge don’t they. Re your client who has had their diagnosis retracted, I know many who have had this happen, and it is very difficult to come to grips with. Being misdiagnosed with anything is hugely challenging, and perhaps, is could also why so many disbelieve in the first place… but as we know no-one can be diagnosed definitively until autopsy, there is always a risk of a person not having dementia, but cognitive issues for some other reason.
      Anyway, onwards and upwards, together! As always, thank you for your friendship and support, and looking forward to seeing you in February xox


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