Information, Curiosity, Confusion and Alice

Given the worlds current Covid situation, achieving personal contentment is seriously challenged. Every day we are literally saturated with Covid related information be it theory, research or rhetoric which is often conflicting leading to information overload and confusion. Curiously, the confusion sometimes drives us to look for more information in an effort to gain clarity but instead we end up feeling out of control and fearful. Layer on top daily life restrictions which are subject to regular change and enforced isolation, no wonder we feel increasingly stressed! 

I find it interesting that this whole experience has forced everyone to feel what people who live with chronic illness or impairment feel every day; since birth or following a later diagnosis or life changing events. The feeling that due to a health impact others can exert their power and control; that you are inferior and can be marginalised...it is not pleasant. I hope this new shared understanding drives change in the overall health, wellbeing and care agenda. I hope it bolsters the realisation that we need to deliver 'real' person centred care and the importance of patient engagement.

In thinking about the matter of information, curiosity and confusion I can't help remembering Lewis Carrolls' Alice. Just like her, generally we each of us continually search for knowledge to help us make sense of the world, who we are and how we fit. This 'need' magnifies in relation to health and wellbeing. Our health or lack of it is something that drives this quest for each of us throughout life.

Covid is a condition that can negatively impact health, and for the first time ever no matter our personal situation we are ALL impacted by it. This virus has ushered in an unprecedented management approach that we cannot escape. I can't help thinking this is because health and fear go hand in hand. As a Society we are being asked to protect the NHS and the vulnerable. We understand the reasoning, but it doesnt make the experience any easier.

Distil this down to an individual level and think about someone who receives a life changing health diagnosis - challenged health ultimately changes what we do and how we do it. This can alter our hopes and dreams, our self imposed life path, causing feelings of anxiety, depression and loss of control. Suddenly aspired futures seem unobtainable. This mindset of 'lack' or 'inability' can inadvertently be reinforced by medical experts, peers, family and friends who largely experience their own lives within the accepted 'norm'. Without access to those who share your experience, the early post diagnosis days serve only to foster insecurity, reducing confidence and hope. The issue is that aspirations are shaped by our perception and experience which may not have been fully informed (and are not always correct), also, they do not have to be fixed. When tested, people often find they CAN still achieve what they had hoped for, albeit differently, or by taking a longer route and actually sometimes the final achievement ends up being so much more than previously hoped for. 

At diagnosis, access to trusted and accurate information that is unbiased helps open minds to what IS possible. Together with shared experience content, this rounded knowledge is valuable in building an accurate understanding of lived experience.

Clearly the topic of 'information' presents a real society challenge. It can both benefit and detract from our mental health. It seems to me that information will always be important but what we need to do as individuals is work out why we want it, where we can find trusted sources and how it all fits together to help our plans and decisions. A tool to help us do this adds value if it can search multiple 'trusted' sources, curate and index content, organise and present it back logically, because it can search the chasms of the internet, validate sources and simplify what is currently a time consuming process. This is our constant challenge and one of the reasons we started the Melting IceCubes Health journey; I found that I needed to spend precious hours searching for trusted, relevant information through challenging times when what I really needed was efficient access to the vast amount of health information available. My experience is replicated every single day all around the world.

At Melting IceCubes Health we are focused daily on refining our information capabilities. This is important work because when health conditions cause emotional upheaval, physical transformation and self-identity is threatened we need to be signposted to helpful information to stabilise us, recognise a way forward and regain self confidence. We need to realise that although life may be changed, it is no less worthy. Re-balanced confidence helps us reclaim determination, control, power and independence; the realisation that you are NOT less, are not necessarily constrained by current medical understanding, can be the master of your own future and critically ... rewrite what is known. You have a choice; you can still live, and live well.

Which brings me back to Alice, there are so many lessons attached to her story, but I love these 5 borrowed from Tawyna's writing (thank you)

1 - Dream of Impossible Things

Alice refused to accept that unfeasible things were impossible and went about her life and path caring nonetheless about what other people defined as difficult. Setting (high) goals and striving to meet them is something anyone could and should do. It’s important never to let anyone else in your life define what is impossible for you!

2 - You Are a Different Person Today Than You Were Yesterday

What everyone should take away from Alice is that we are a different person today than we were yesterday, and we can be a different person tomorrow too. Whether you choose to continue being the person you were yesterday or are working to be a better person tomorrow is pretty much up to you.

3 - Sometimes You Have to Fall Down a Rabbit Hole to Get to Where You Need to Be

When Alice chased the White Rabbit, she wasn’t happy. Her life, her future, and just about everything seemed out of control. This happens in life too, and like many others that have crumbled under pressure and anxiety, Alice fell down a deep dark hole; but she immediately began to look for a way out. In fact, the entire time Alice was in Wonderland, she wanted to find a way home. Just like Alice, even though we may bruise our soul a little, we can get back up, dust ourselves off and look for a way out.

4 - My Reality Is Different Than Yours

When people judge others as “weird” because they aren’t “normal,” remember, normal is a relative term, and your reality is just different than theirs. As individuals, it’s our responsibility to create our own reality, and not worry about whether other people think we are normal or not.

5 - Existence Is a Lifetime of Adventures

Laughter and tears are an important part of living; life is experiencing both of these (emotions). In addition to feelings, life is also full of twists, turns, surprises, disappointments, and so much more. Simply existing isn’t enough to truly enjoy life; accept that existence is a lifetime of adventures. 

Finally 

Covid has changed our world forever; there is so much we simply cannot control or fight. Do take time to consider how you feel, and what is right for you. Filter out the constant noise surrounding it and recognise that unlike so many other health challenges we face, no amount of information will change things; this particular situation is State controlled. As a society collective we do largely need to do what is asked of us. In the weeks and months ahead there will be elements of choice, which you will need to do what feels right for you. It is futile to churn our way through the onslaught of opinion that hits us every day and challenge what we do or don't believe. Maybe the best we can hope for, is that like Alice we learn to cope with the crazy Covid (Wonderland) rules, and that day by day we simply get better at personally managing the situation. What did Alice teach us? - Existence Is a Lifetime of Adventures.... I for one am certainly learning to live with the laughter and tears. 

Would be interested to hear your thoughts   

Molvia