One of my ongoing CVI bugbears is the disparity between what the scientists/researchers/medical professionals understand of CVI and what those of us with the lived experience understand of CVI - and dare I say it, the at times reluctance of the scientific community to accept what those of us who either live with CVI, have a child with CVI or support someone with CVI intrinsically know. And just to be clear, I feel quite justified in this opinion, having on many occasions had my experience of CVI dismissed (or even laughed at) because it didn't meet someone's scientific understanding of CVI.
Don't get me wrong, there is definitely a place for rigorous scientific research into this complex condition and as someone that can now straddle both sides, I will hopefully continue to add to the growing scientific understanding of the visual issues associated with CVI and their impact on the lives of those with this condition. But I also think there is a place for the voices of those with CVI to be heard and accepted. Take for example, CVI meltdowns and looming. These are two CVI related experiences that have been introduced into the CVI vernacular by CVI Scotland. A CVI meltdown refers to a complete incapacitating behavioural reaction to an overload of visual, auditory and other sensory information, which leaves the affected person completely unable to cope and is mentally incapacitated for a period of time. Looming refers to the frightening experience of something suddenly appearing (or looming) in front of someone with CVI. Both of these have been described by almost everyone who has CVI, has a child with CVI or supports someone with CVI.
However, neither CVI meltdowns nor looming have been accepted by the scientific community as actual 'things' yet, as neither has been fully researched. But trust me, they are very real and can be really frightening when not understood or supported. So why do CVI meltdowns and looming have to be proven? Can we not just listen to the many voices of the lived experience and accept them as significant elements of CVI? In this way, we are working together as a partnership and collectively creating a more real world understanding of CVI. The scientific community and the ones who live it every day, walking together, hand and hand towards a better future.
As I write this, I can imagine that many of you reading this might roll your eyes at this very sentimental ideal. But I think the precedent has well and truly been set for a changing of the guard so to speak, in relation to developing a deeper understanding of a specific condition. Take for instance mental health. It wasn't so long ago that we relied on experts to tell us what it meant to have mental health issues and how to support those with mental health issues. Now, we have listened to hundreds, if not thousands of people's experiences of mental health from all walks of life and have broadened our collective understanding of yet another extremely complex condition. Better still, not only have we listened to people's experiences of mental health, we have also respected their experiences and acknowledged that that was their journey and although it may be different to what the literature says about mental health, we have accepted that it was their very real experience.
So, as I sit here writing this, contemplating the year we have all just had and thinking of the year ahead, maybe I might just change my expectations for 2021. Instead of dreaming up lofty New Year's resolutions for myself, I am going to instead invite others to join me in the changing of the CVI guard. Let's put those with CVI at the centre and work together to find a way to make their lives better. Whether it be by listening to the growing number of voices talking about their experience of CVI or taking the time to talk to education or rehabilitation specialists about what they have found has helped children with CVI or listening to the researchers who are dedicating their time to finding ways to help those of us with CVI. We are all equal in this journey, all of us have an important part to play - so let's listen to each other and stop dismissing someone else's experience as not being valid or important. Let's work together to change the CVI landscape for the better. Who is going to join me?
Our advisors wanted to add...
The issues raised in Nicola's blog are fundamental.
For her, a visual brain injury sufficient to need brain surgery, caused the visual difficulties she so eloquently describes.
So why don't some medical professionals believe her descriptions of what it is like to have CVI?
Visual migraine is a condition that can only be diagnosed by taking a history from the person affected.
Spontaneously volunteered description of the pattern shown below partly obscuring the vision in the same way in each eye is needed to make the diagnosis.
...but this pattern has been known about and has been in the literature for centuries.
So yes. A visual diagnosis can be made by taking a history, but for new diagnoses to become established within the belief structures of medical practice they need to be published in refereed literature.
The conditions we've called 'Looming' and 'CVI meltdown' on our CVI Scotland website, have been repeatedly and consistently described to us by our website users, but these descriptions have yet to be published in refereed medical literature.
So our next step needs to be to put together a group of accounts of these symptoms from people with validated CVI, and to submit these for publication in accessible refereed medical literature.
That's now on our agenda for the New Year.
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