Chatting/struggling to hide a grimace with a hypochondriac this week has been a strange reminder of just how much, as patients with chronic illness, we learn to accept as 'normal'. Everything we feel and experience becomes a part of our daily lives and we quickly learn to adapt to what is essentially an abnormal situation.
I of course never thought the feelings I felt were 'abnormal' until I was diagnosed with Crohn's Disease. I always felt my body wasn't quite like other bodies… bodies. I suppose I just put everything down to growing pains, or tried not to think about it at all to be honest; it seemed too dirty and weirdto talk about. Of course I'm not of that opinion now!! I'm more than happy to discuss what’s left of the inside of my stomach and/or the Bristol Stool Chart with anyone who'll listen, anywhere! Doctors surgeries! Parties! Funerals! Anything goes.
But as patients with long-term or incurable illnesses, we learn not to complain and gripe about the small things. Small things most 'normal' people would consider being LIFE-DESTROYERS. Things such as relentless and incredible fatigue, aches and twinges from joint pain which stop you being active or carrying out BASIC IMPORTANT LIFE ACTIVITIES like scraping the last out of the Nutella jar and petting cats. We suffer pain daily and learn to treat it as just another annoyance, like cystitis and/or Donald Trump.
Even faster than the BBC buying the rights to another Jane Austen novel, it’s at breakneck speed that we make these adaptations.
The trauma of diagnosis is swiftly followed by the realisation it’s NOT EVER GOING AWAY, then the "it’s not as bad as it was/could be/looks" creeps in and thus begins the 'new normal'. We have very quickly reached a point where we realise we tolerate a lot more than your average Joe. If you are reading this and your name is Joe it’s just a turn of phrase Joe, calm down Joe you’re always overreacting Joe. We learn what our stomach can stomach pretty quickly and act accordingly. It’s not fun and it’s not a situation we want to find ourselves in but it’s where we are and must be acknowledged. Burying our heads in the sand is pointless (and really nips the eyes).
The important thing to remember when accepting this new version of normality is that we don’t neglect to keep questioning things. Don’t just 'accept' absolutely everything as part of the sickly process. Question WHY the pain is worse?, WHEN is the best time to seek a second opinion?, WHERE in the name of all that is holy is the Nutella kept in this house?
If we allow ourselves to accept pain and misery we will become pain and miseries. (Aware that sounded much more Dalai Lama than I’d expected but if you want to list me in the same vein as him then that's fine, I won’t complain. Although I will add I have much better hair and breasts than the big man himself. But in all seriousness, it’s vital we only allow a certain tolerance of our new version of ‘normal’. We shouldn't forget we don’t deserve to feel awful 24/7, and we shouldn't. Where we can help ourselves and practice a little self-care we should. That’s my favourite version of normality.
