With not being believed or with being doubted, comes an enormous burden, and I call it the burden of disbelief. For a younger person to have been told they have dementia, they must have passed (!) all sorts of medical markers. There are many tests, and they are invasive, time-consuming, expensive, humiliating, and tedious and more than anything else, very worrying as we wait to hear what is wrong, why we can’t remember the way we used to, or find the words to name things. Usually the first few rounds of tests are not definitive, so they merely make us worry more. But, we KNOW something is wrong. Then, smash, bang, our world comes crashing down, we are told we have dementia. Our life is on hold, our world momentarily falls apart, and we go into hiding for a while to think about what the heck is ahead of us. Then, out comes the disbelief; our family question it, our friends tell us we are just like them, and it is normal, others trivialise or laugh about it. Then as people start to believe, they say you’re just like an elderly mother who has been diagnosed with dementia. It is not that pleasant to be likened to those over 70 or 80 when we are so young. It has often made me wish I had another cancer, even one with no sign of a cure, rather than dementia. Why you may ask? Well, it would mean there is some treatment, the medication is subsidised by the government. It would mean there are more support services available, funded by the government or by celebrity fund-raising. It would mean most people would be willing to speak to me openly about it, face it with me. It is a more publicly acceptable illness without any of the stigma. And most important of all, there would be no burden of disbelief. If I speak out about this now, here on my blog, with sincerity and honesty, all I can hope for is that others will listen and think about the words they glibly use before they speak to a person with dementia. My thoughts and words about the burden of disbelief have been in progress for some time, and I need to say publicly I don’t want you to stop being who you are either; it is not easy to understand dementia from the inside out, so how can I reasonably expect others to understand it unless I spend the time to invite you into the inner realms of my (our) world? Welcome to My Unseen Disappearing World.