In my long and varied 'career' as a professional patient, I've held many beliefs on how I should and shouldn't respond to developments or setbacks in my health or treatment. I've tried to follow the rules laid out for me in supposedly inspirational quotes, telling me to look on the bright side, and that a ‘negative attitude leads to negative results’. I’ve tried to find a good balance when things go wrong; tempering my disappointment with the inevitable reminder that it could be worse, that is has been worse, or that I’m ‘lucky’ I’m not in a more difficult situation.
I’ve tried to remind myself when times get hard, that I’ve dealt with a lot already in my sickly ‘career’, and that, as always, I’ll deal with whatever the next disaster is when it comes with aplomb. But to paraphrase Ronan Keating, despite knowing that life with chronic illness is a rollercoaster, with all the ups and downs and occasional vomiting and sporadic screaming associated with it, whether I’m prepared or not, I’ll still find it difficult when my symptoms worsen, or I’m diagnosed with something else, or when I suffer a set-back in my treatment.
I’ve internally berated myself for not being tougher, more hardened to these eventualities, which only serves to make me feel I’m not being a ‘good enough’ patient. I’m just not trying hard enough, I’m weak, I’m lying down to my illness. In truth lying down is SO GREAT, so I can be forgiven for allowing myself that one.
But the reality is, when I find myself feeling I’ve gone back to square (minus) one with my condition, I’m permitted to feel bad about it. It doesn’t mean I’ve given up, or that I’m not trying hard enough to be ‘positive’. It just means I have human emotions and real feelings and find it too exhausting to pretend otherwise. Masking our pain only serves as detrimental to our mental health.
We are constantly told to be ‘strong’, and ‘toughen up’, but when we experience chronic illness we spend so much of our days just attempting to remain upright, that it’s exhausting forcing ourselves to slip into neon lycra and hop in the ring for another round. There is no belt, no trophy, no prize for getting through each day when you live with a chronic condition. There is no justification for smiling through it either – no reason for us to ‘toughen up’ – we are already as tough as we can possibly be, we just might not feel like it most of the time.
Pain is not ‘negativity’. Our response to our condition and the fallout of it should be our own and isn’t up for discussion. Each of us will respond to changes in our illness as they occur in our own way, and that might not always involve a smile. The idea of positivity being key to recovery can be just as toxic as we perceive negativity to be. Forcing ourselves to paint on a smile when we are in deep pain is illogical and damaging. We should allow ourselves the space to work through our feelings without fear of being judged. Telling us to ‘chin up’ is for the benefit of others – those around us can be uncomfortable dealing with us when we are feeling bleak, its easier to encourage us to cheer up instead of allowing us the room to be blue for a spell. Don’t force positivity on those of us who maybe don’t always feel like it – and if you are in pain, don’t beat yourself up for feeling.
Feeling can be healing.
(Trademarking that for an inspirational quote poster as we speak so BACK OFF).