“Write what you know” is always the first advice for aspiring authors. So when I started this substack, that is what I did. I wrote about my experiences of Meniere’s. That is something I know about. I know what it is like to have tinnitus, to lose hearing, to feel as if my ear is full of cotton wool, I’ve got first-hand experience of the kill-me-now world-spinning vomit-hell of severe rotational vertigo. These things I know because I’ve experienced them. No one can or should suggest that somehow I didn’t experience these things, and others can’t (yet) share my exact experience or see the world through my eyes, so my description of my internal world is mine and mine alone. I share these things in the hope that maybe they shed some light on what that experience is like for those who don’t suffer, or to allow those who do to feel less alone.

Despite having our own internal subjective experiences, I believe that there is a single reality that we all share, a universe that we all inhabit and that we are all trying to piece together an understanding of. There is way we use the word “know” which applies to this external reality. When someone says that they “know” something about this “real world” should we just accept it the same way we might for their reporting of their internal experiences? Not necessarily, and I want to dig into why, and what this has to do with supporting people with chronic conditions like Meniere’s.

What does it mean to say we “know” something about the real world? For me it just means we believe that thing really strongly. I’m not sure it is possible to know anything about the real world with absolute certainty - so everything is a matter of belief to some extent. There are things that I kind of believe may be true, other things that I’m fairly sure are true, and then things that, were they to turn out not to be true, would totally up-end my models of reality. Only the last are things that I would say I “know” to be true. For example, I suspect that AI might eventually be smarter than humans, I’m fairly confident that some saturated fats contribute to heart disease, but I’m almost totally certain that our planet is roughly a sphere. To discover the earth was not round would be quite literally world-changing so I’d say that I “know” it to be round. Ultimately, to say something is “true” or a “fact” is to say it matches reality as far as we can tell. This is partly why I don’t think you can ever be entirely certain - because there is always the possibility of something we didn’t consider, some small way that we haven’t noticed yet where our “fact” doesn’t quite match reality. So all we can do is get closer and closer by checking more and more.

We try to agree on these truths, or facts, and where we don’t we should at least admit that there is a truth to be found, we just haven’t got there yet. Fortunately over the past few hundred years, we have developed the most powerful toolkit ever to help us convert beliefs into knowledge. It is an approach that takes account of our own biases, our tendency to believe what we prefer, our individual mistakes in thinking. It allows us to take an idea and test it, check it, refine it, and eventually either reject it or state that it is the best we currently have. I am of course describing “science”. It is by far the most effective tool we have for uncovering knowledge about reality. Science is often portrayed as a body of knowledge, a set of facts. But this is not true. It is a process, a method, for getting us ever closer to truth about the nature of the universe. That “closer to” is very important. Science never lets us say we “know” something for definite, only that we are becoming more and more sure, or that we can reject an idea because we found times it doesn’t seem correct. This way together we can home in on a better and better understanding of the universe we all inhabit and the workings of ourselves and our environment.

I run a support forum for Meniere’s disease, and the topics of what we know and how we know it are absolutely central to such groups. People join support groups for a variety of reasons, which seem to boil down to two things. They want to hear from others about their experiences of the condition, and they want solid reliable information. When someone says they suffer from tinnitus, this is a “fact” about their experience. If someone else claims that all tinnitus is definitely caused by the use of hairdryers, they are making a claim about the wider world. These two claims are very different, and the second is one where the best approach to discovering if it may be true is science. That is why I would always ask people to back up claims of the second sort if they are expressed as really solid definite facts about the world, so we can see if we can all reach the same conclusion. What does the science say? What led you to having such a high level of belief in this idea? Should we all reach the same conclusion? Claims about treatments are where this gets really interesting as they can easy move between the two types of “know”. “I rubbed a point behind my ears and my tinnitus got better” - personal experience of some events, maybe the rubbing caused the improvement, maybe not. “Rubbing a point behind your ear will cure tinnitus” - claim about the wider world, something we can investigate, test and reach some conclusions about. The later would need good quality evidence to back it, and what exactly qualifies as good quality evidence is another topic for another day!

Who knew there was so much philosophy lurking in support groups? Ultimately I want to believe as many true things and as few false things about the world as possible - I hope others will join me in that effort and help in championing the work of scientists and researchers as they use the best tools we have to get closer to truth.