I've been thinking a lot lately about Crohn's. Mainly because i've been been feeling rancid, and also because i've been involved in a charity thing where i've had to talk to lots of people about my disease and what it entails. I've had to recount my story from pre-diagnosis to post-op and it's been a bit of a whirlwind.
When I talk about my life with Crohn's, on the whole I try to be positive. I try to be upbeat and have an "it could be worse!" attitude. This works on the most part, for the outside world. For my inner circle (not a euphemism) this fails miserably as they can pretty much always see right through me.
I've tried to think a lot about where my disease fits into my life. To be honest I'm still not sure. Lots of people I talk to use the phrase "defined by my disease" - personally I would like to think I am not, but lately, at least in the past few months, my life has certainly been going down that slippery slope.
Like a lot of sufferers, when I feel poorly I get down. I think about how its happening again, and how it will always happen, again and again and again.. then I start to feel better and think it's not so bad living with an incurable illness and I go round on this not-so-merry-go-round every few weeks.
Today I asked lots of my fellow Crohnie's if they feel they have ever, or will ever 'get over' having an incurable illness. The answers came back as a resounding 'No'. Not altogether surprising but a little disheartening.
Like me lots of people have struggled with knowing where Crohn's 'fits in' - obviously in an ideal world, in the bowels of Hell (pun intended). Crohn's can be relentless and creep up when you least expect it, or usually when things are going well. Anxiety at how uncertain the future can be is always there too, thats a hard one to shake off. Some become depressed due to Crohn's stopping them achieving what they want in life or when it gets in the way of relationships and even having a social life. Many people explained how hard it can be constantly having to explain the disease to others, or the feeling that no one can truly understand it.
Lots of Crohnie's feel the worst being hospitalized and the added uncertainty that can bring.
Then, after hearing all these stories, something wonderful happened. Rather than wax lyrical about how hard it is to cope with Crohn's, they shared their positive days, and how although they, like me, have to battle daily with sometimes unbearable symptoms, they know it is not all they are. That life goes on. That they HAVE to fight everyday to get where they want to be. To spite Crohn's. People I talk to everyday say they garner amazing support from others with the illness, which is wonderful to hear, especially for those who are not blessed with support from those closest. These people inspire me to stay positive in the face of a horrible illness.
I don't want to be defined by a disease. But I do want it to shape my life in a positive way. The knowledge I have now inspires me to help others where I can, and if possible make it easier to lead people through the maze of confusion that often arises post diagnosis. I want to show others that if people who have a incurable illness can remain positive than you damn well can too. You have a cold? Aww SCREW YOU!
There is always another day, always a time when Crohn's will not be rule you and always support out there. You may have defunct bowels but you have an army of Crohnie's behind you when you need them.
Crohn's is not all I am, but it will be with me for life so my disease and I will just have to learn to share this body as peacefully as possible. That means letting me eat a vat of mash once in a while, OK?