The Never Ending Story
Since my diagnosis I’ve struggled to find ways to explain the complexities of my disease to others, in a brief, compact and informative way. I've established along the way that solving the mysteries of the universe or training to walk on the moon would probably be quicker and easier. Needless to say it's proven to be a continuous challenge.
When I find myself in the situation of having to discuss my illness with others, I’ll generally start with the basics: "I have Crohn's Disease" - if the other person hasn’t heard of it (90% of the time) - I’ll explain it's a bowel disease but can affects all parts of my body, internally and externally. By that point they’ve hopefully fallen into a coma or at the very least walked into traffic to avoid hearing more. If they are still present after that first sentence I’ll field any questions, providing as much accurate information and as little ‘woe-is-me’ attitude as I can muster.
I struggle with my own imagined assumptions that I’m instantly boring people, colouring their opinion of me in a way I’m not comfortable with, or sharing too much information too soon. I don’t want to make people feel uncomfortable or have them assume that I’m looking for sympathy or worse; pity. It matters to me how people react when I divulge the details of my illness, not because I’m vain or conceited, but because how it shapes my own view of myself is a constantly evolving issue. I assume that same rollercoaster ride will happen for outsiders getting to know me too.
I also want to start a conversation about illness which doesn’t mislead or leave room for incorrect assumptions on what chronic illness involves. I want to honour those other patients in the same sickly boat by not expressing myself clumsily.
The amount we as patients choose to share is of course wholly unique to each individual. It is dependent on countless factors, such as our own personal self-confidence, our knowledge of our own condition, fear that others will misunderstand or mock us, or simply being private people who want our illness to remain just that. Each and every one of those reasons for either sharing or withholding information are valid and shouldn’t be treated with judgement from anyone.
The world is full of people who want to tell us how we should and shouldn’t ‘be’ as patients. What we should and shouldn’t discuss, and what a ‘sick person’ should look like. None of that should rail-road us into pretending we are healthier than we are, play-acting at disability, or feeling the need to live life in quiet solitude as all well-behaved debilitated people should. Don’t laugh. Don’t dance. Don’t love. If you can live a fully-rounded and joyous life, then you can’t really be sick can you?
We own the rights to our own 'story' and can rewrite it to suit. We can choose how much of an impact we allow our illness to have on those around us, if unfortunately, not ourselves. What we elect to share is up to us to decide. Sharing is normal and natural and a need for understanding is inherent in all of us, so if you want to tell your story then do so. Don’t be disheartened if you don’t get the response you were looking for first time; like the best stories, they are not to everyone’s taste. Doesn’t stop them becoming classics.