We have all been there. Yes, even me. Someone we love and care about is given a terrifying and life changing diagnosis and we feel helpless. So we wrack our brains for any recollection we have – a news article, a google search, our second cousin’s best friend’s sister, any connection to the condition we can possibly piece together to offer some level of support and assurance that everything will be ok. To offer them a miracle to believe in. It makes us feel better to be able to do so.
As someone who has lived with chronic illness my entire life I have pretty much heard it all from people advising how I might find relief from my condition or even why I have it. Because you know, a friend of a friend of a friend’s great aunt cured herself that way.
I have been prayed for on aeroplanes, told that my mothers emotions during pregnancy is what caused my defective genes (and therefore I can will my genes into correcting themselves), accepted little baggies of homemade herbs and I could write a book about that ‘one’ thing people living with lung disease should eat or not eat to solve their problems (and potentially bring about world peace).
It is unfortunate I couldn’t bring myself to eat solely cow lungs and lemon juice because that one seemed promising and if you are wondering, I do still eat dairy. From western to west of woo woo there is a good chance I have heard about someone who has been cured by it but no, I have not yet cured myself of my chronic disease. That’s not to say I haven’t found miracles along the way.
I must be clear this is not a conversation about care modalities. In that regard I am very open minded. What I am talking about here is the message we send to patients when we tell them they should to add something more to their health regime.
When I mention that I have CF to someone, often it is like a free pass for people to give me advice about something they know very little about. An invitation to critique my approach to care in 100 words or less. Of course I understand there is usually no harm intended, but unless you are a professional or another patient there’s something you need to know; what your words are really suggesting is that I am not trying hard enough. Maybe I don’t know enough, don’t do enough, am not enough to fix my condition.
As patients, this dialogue infers if we can’t find the miracle fix for our condition, we failed because someone else succeeded that way. That is a difficult to swallow because what you don’t see is how hard most of us try to keep ourselves well.
The thing with health is it is both a science and an art. Even if two patients with very similar disease history were to follow the exact same health regime, they may experience two extremely different results. Sadly, effort isn’t proportionate to success. I absolutely, wholeheartedly believe we can shape our health experience but we can’t always control the outcome.
Acceptance makes others uncomfortable. But acceptance is greatly different from giving up or complacency. We can find peace and acceptance while still striving for more. Acceptance is healthy, a gift we give to ourselves as patients so we don’t go totally crazy because we can’t try all the things in every corner of the internet. Nobody can fight for our own life as hard as we can, but how we do that; what feels right for us, is unique, diverse and frankly, nobody else’s business.
I know very few patients that aren’t doing all that is within their capacity to live the longest, healthiest life. Sometimes I do things I would rather not in my health journey – things I recognise aren’t ideal. That doesn’t make them wrong. You don’t see the nights the choice to do them or not has kept me awake wondering if I am walking the right path. The decision didn’t come easily or because I am naïve.
Health and healing are not a competition. Let’s not make them into one. We all ‘deserve health’, but sadly we don’t all get it. Can I assure you for those who don’t, it isn’t because they didn’t want it badly enough. You can’t fail at finding health or even healing. Because both mean something different to us all. Often they aren’t a destination.
As patients we have to believe in ourselves enough to find the right management path, trust we have chosen the one right for us in any particular moment and love ourselves enough to follow it. And just in case you are wondering, I do believe in miracles – in my life I have experienced many. But perhaps my miracle looks different to what you would wish for me.
So next time you are tempted to offer health advice to me in the hope you can help me find my miracle. Know this, offering your support to me doesn’t mean you have to fix me. I truly don’t expect it. Just being there for me is enough.
photo: Emma Newby @Some Wild Darling
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