After 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:
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.