Happy New Year! This is the second year of Visual Snow Man. In part two of this annual review I discuss the topic of speculation. My intention here is to be honest, not to offend. Nothing I say is directed at specific individuals.
In case you missed it: in Part 1 I took a look back on 2018 and my personal progress.
The Topic Of Speculation
With what I mentioned helped me in Part 1, and on the basis of a number of other observations, it was tempting for me to speculate on the possible role of mast cells and histamine in my progress (and I was going to). But this I’ve come to accept isn’t my role or job. It isn’t yours either, unless you’re a researcher. This is what I want to talk about in Part 2 of this annual review.
Sometimes I do feel like others – that to some extent there remains an unsatisfactory accounting for other symptoms and anecdotal clues which may bear significance to Visual Snow. I think that is understandable.
However there are always going to be things which will remain unknown about Visual Snow, at least for the near future. Is it worth speculating on these unknowns? What can you or I really do that the experts can’t?
There are people who have had Visual Snow before Visual Snow was even a word, Visual Snow existed before “Visual Snow”, and “Visual Snow” existed before “Visual Snow Syndrome”.
When Visual Snow became a word it took on the meaning it was given by different groups. It was given one meaning by the medical community, and another by those who had the condition themselves.
The basis for the meaning in those two groups and among individuals has been different. That has been a great driving benefit, combining on the one hand the theoretical understanding of experts and the practical experience of those with the condition. However it has also been a cause of avoidable problems along the way.
Historically, I believe there has been too large a gap between the researchers and the community of people with Visual Snow. A symptom of this is arguably the persistent speculation, panic, and confusion that is seen among parts of the community. Panic and confusion are two meanings that Visual Snow does not merit or need.
A Lack Of Organisation
Initially a gap arose because there was so little known about Visual Snow.
Neither group knew how to interpret what was known. A form of migraine aura, HPPD, or simply malingering. Visual Snow was initially frustratingly dismissed and mislabeled by the medical community.
In this day and age when the people cannot find satisfactory answers it’s to be expected that they will turn to social media and the internet. The questions that draw the most interest are of course the ones that are most difficult to answer (i.e. what causes Visual Snow, what cures Visual Snow).
People got restless, desperate, and speculative. The forum equivalent interpretations of Visual Snow were extreme – often including suggestions such as tumors, glaucoma, retinal detachment etc.
A Lack Of Simple Communication
Later some serious research and organised effort started, which ironically grew out of the persistently close association of Visual Snow with the eyes, migraine, and HPPD.
It largely remained the case however that researchers communicated separately via their research and patients in forums. It’s important to appreciate that from the researchers’ perspective it is not their job or priority to open dialogue, explain their research, or sit in forums.
However beyond the forums nobody was addressing the practical questions of how to deal with symptoms. Because too much was still unknown from a traditional clinical perspective.
Meanwhile the complicated nature of what was being discussed in research arguably inspired and contributed to increasingly complicated (and at times very dangerous) suggestions within the community.
Much time and money also went on misguided medical tests or wrong treatments simply when people could not access research papers, or alternatively they they could not understand the jargon of research (thalamocortical dysrhythmia etc.).
How many times was Visual Snow mistaken for an eye disorder or migraine aura?
Previously this issue wasn’t so clear. But when the research said Visual Snow was a distinct neurological disorder it seemed the associations themselves caused people difficulty.
If you search for Visual Snow you will find more and more new articles, but they still often parrot these fundamental mistakes. That’s indicative of an unclear outside impression, and unfortunately it has potential to be a self-perpetuating cycle.
In recent times we have seen a drastic improvement with more progressive research and more dialogue. The Visual Snow Initiative I feel has helped to fill some of the gap by providing a platform for more direct communication.
But why does confusion and panic persist?
Online Chinese Whispers
People all have different levels of understanding, someone may have learnt to live contently with Visual Snow, or someone may have read all the literature, but others may be very much lost and confused. Your subjective perception may be completely different from someone else (this includes researchers, this includes myself).
If you are hearing something not from the original source or if that source doesn’t explain things in a way you understand, then it can take on a subjective meaning for you. It’s like Chinese whispers.
Yes it is unfair to expect everyone to understand everything.
On the other hand there will be people who will believe what they want to believe despite logic or reason because it is a coping mechanism for them. Or others who still speculate out of simply not reading the research or attempting to.
It’s equally unfair to rush others into potentially dangerous choices or to fuel desperation.
If an anecdotal interpretation is wrong there may still be truth in it. But if something you say is poorly thought through or even dangerous please think hard before sharing it. As I mentioned in part 1, the simple approaches are often the best and most harmless.
Input from those with Visual Snow is certainly important, we are the ones who experience Visual Snow – but there is a good and a less good way of going about it. Answering surveys or posing questions directly and sensibly, like via the recent Q&A run by the Visual Snow Initiative may be the best choice.
Why not read the research to not rely on Chinese whispers, or listen to what the experts have to say via the Visual Snow Initiative? Why not pursue something positive offline rather than distract yourself and others online?
If people have concerns they need to share them more with the researchers rather than among themselves. At the same time these concerns also need to be answered, they can’t just be ignored.
Life And Health
The hard fact is that there isn’t a cure for Visual Snow yet but there are things you can do to improve your life and health with Visual Snow.
The researchers are the ones who need to focus on finding a cure, our role is slightly different.